Harps is an award winning blogger who shares her remarkable journey of motherhood after experiencing post natal depression and an unexpected diagnosis of Down’s syndrome. Her readers have often coined her words “relatable” and “warming”.
There are some people that are terrified of Down Syndrome … and then there are some who’s hearts desire more of it after unexpectedly experience it’s beauty.
When I first stumbled upon Kelsi’s Instagram page I was in absolute awe. Firstly, at how adorable both Colt and Nic are, secondly, I found the family’s story so compelling and thirdly, what a “normal” family they were! It’s a unique and beautiful story – one of pure love. If only this world had more people like Kelsi and her family and saw through the misconceptions and stereotypes associated with Down Syndrome.
With their seven brood family, they’re loving life and seeing their Instagram posts bring me so so much joy. As I progress through my journey of acceptance, families like this make me realise how lucky we really are. When we sit back and reflect on our lives the last 8 months, it has been the most difficult 8 months of our lives as we seek acceptance while dealing with health issues but also the most rewarding. Saajan himself has bought us and all those around him so much joy.
I want to thank Kelsi for sharing her family with the world – she has no idea how much joy she has bought me and how much my acceptance has come along by watching her love and desire for more of the same!
To think that an unborn baby with a Down Syndrome is coined the term a “risk” – do they look dangerous to you?! Maybe dangerously cute!
Here’s Kelsi’s story:
My name is Kelsi. I am the mama to seven children ranging in ages from 13-1 and you might already know about my passion for sharing the beauty of my two youngest with Down syndrome if you have ever visited my Instagram page at Downrightwonderful.
When our sixth child, Colt, was diagnosed with Down syndrome shortly after his birth his little something extra was a surprise, but it was something wonderful, changing our lives and hearts forever and led us to the adoption of our seventh child, Nic, who also happens to have an extra chromosome.
We learned that Colt was gifted with an extra chromosome shortly after his birth in July 2014. We knew that our son was “fearfully and wonderfully made” in the image of God and there are no mistakes.
Baby Colt
In Colt’s birth announcement we wanted to make it known that we celebrated his Down syndrome and had just as much joy with Colt as with our five others who have all developed at their own pace, and had their own little package of health and behavior issues with the only difference being that their “package” was not given a title or cute physical traits that might define their issues into a specific group.
I could carry on about his smile, hugs, perseverance, love, funny faces, endless goodnight kisses, dancing, signing, his insistence on waving at strangers until he gets a wave back, and more, that add so much joy and love to our family. But, Colt has added so much more than that to our lives.
Our love for Colt opened our eyes to our fear of discomfort, disabilities, pursuit of ease, and the safe road that keep us from the joy of living a life in a deeper trust in God and a deeper love for others.
We had never thought about adoption before but through our son’s birth our eyes were opened to the needs of children all around the world with a special calling to those with Down syndrome and special needs.
When we learned about Reece’s Rainbow, a ministry whose mission is to find families for orphans with Down syndrome, at our first Buddy Walk and read that in other parts of the world these children are viewed as outcasts with no ability to learn or be functional members of society, languishing in mental institutions, hidden away from the world in shame, our heart broke for these children. We saw their faces and pictured Colt being born into those circumstances. Our family knew that we must do something.
We stared at the babies on the Reece’s Rainbow web site for almost a year, saying that we will adopt “one day”. Then I saw the picture of this precious baby boy from Reece’s Rainbow on a friend’s Instagram page. He was only a few months old, abandoned to live his life in an orphanage because he had an extra chromosome.
Baby Nic – the first picture the family ever saw of him
That is when we realized that we would cross the ocean or give our lives for every single one of our children and the only thing holding us back from doing the same for a child, “our boy”, in an orphanage in Ukraine was fear and God is so much bigger then any of our fears. He is powerful and faithful and we needed to trust in Him with the details of the plans that He had laid out for our family.
Adoption was a crazy process but God did take care of every detail from the funding to the travel and every challenge that came along the way.
In January 2017, we arrived home from Ukraine with Nic. We celebrated his first birthday one week later. The first year of his life was spent alone in an orphanage crib but he celebrated his first birthday surrounded by a Mom, Dad and six siblings! What a beautiful day!
Nic has been home for over 7 months now and I can’t imagine life without him or if we had succumb to our worries and fears. We don’t pretend it is easy but we know that our “stillwater” that God leads us beside is not always comfort and ease but wherever it is that He has us, trusting in Him through it because His plans are so much greater and deeper then we could ever imagine for ourselves.
We continue to be amazed at the way Nic blossoms every single day. His smiles come easier and little things that we take for granted with our other children, such as a giggle when something delights him, can brighten our whole week. It’s amazing to watch the transforming power of love in him and also the way that he is transforming us.
The world seeks the beautiful, perfect, or “normal”. They are quick to abort, mourn over or throw out anyone they deem inconvenient, less worthy or less able. And these are the very ones that God has chosen to use to free us from these worldly pursuits and teach others in ways that none of those that the world considers “great”, “beautiful”, “rich” or “famous” could ever do.
I am so thankful for what these boys teach us and the love and joy that I get to experience and share because of them daily.
I hope that by sharing I can help others to see the beauty in Down syndrome but more importantly share the message that we are ALL created in the image of God, fearfully and wonderfully made, worthy of life and the sacrificial, unconditional love that God demonstrated for us.
I’m not sure how you would’ve landed here – either you’re someone that follows our blog already and are embarking on this journey alongside us as you always have, thank you.
Or perhaps you’re a parent that has just received the news that your bundle of joy may have Down Syndrome and you are frantically scouring the internet desperate for information, desperate for reassurance, desperate for that light at the end of the tunnel, desperate to know that your life is not over, that this isn’t the end of your world. Like me on those initial few days, perhaps you are desperate to know what life may be like, to know that it’s going to be ok.
Welcome.
We are now 6 months in to our journey with Saajan and although life is a little slow paced (they call it the scenic route for a reason!), he’s a pretty typical child for now!
I have my days where I still worry, where it feels like there’s a black cloud over my head – all I have to do is look at my son to get an instant smile and most of those worries melt away. My actual fear is society’s ignorance – my only control is to try and educate. But let’s be real – society has moved forward, and there is so much more support available to people like us in this day and age. We are very fortunate. As time passes, I see more and more success stories of adolescents with Down Syndrome thrashing all limitations – starting up businesses, speaking in front of MPs, even driving! Sky’s the limit – it’s important to focus on abilities, we’re all different after all, with or without a label!
If you’ve received a recent diagnosis, I hope you can take comfort in some of the people that have held my hand, and have been able to provide me with reassurance through their children, experience and life. There is nothing quite like first hand experience. Not from professionals, not from doctors, nor from a counsellor, no, from real life parents of those rocking an extra chromosome.
Thank you to every single mama, papa and babe that participated in the below – you have no idea how much strength you and your children have given me. Thank goodness for the power of social media and the amazing and supportive community of Down Syndrome and special needs parents. I am truly starting to understand the meaning of #TheLuckyFew! I’ve spoken to parents of children with Down Syndrome of varying ages – this has been so helpful to see what life may be like. And do you know what? Our life is not over, it’s just beginning!
And for those of you that may be joining “The Lucky Few”, welcome! It’s going to be ok – we will be ok. Don’t take my word for it, take theirs! x
NISHA & KUSH
I remember hearing about Nisha and Kush years before we were ever to cross paths – I’d heard about her through a friend. Nisha has been my constant strength and inspiration through the day we started this journey. Nisha and Hamel have invested so much in Kush and his capabilities never fail to amaze me! Kiera is the sweetest most patient little sister I’ve seen (p.s. Kiera is younger than Kush – there are so many mama’s that go on to have more children after a Down Syndrome baby incase that’s a worry for you as it was for me!). They’re a pretty regular family that travel, enjoy family meals out and have the usual toddler bickering! Don’t you think Kush looks just like his mummy and they both have the most beautiful smile!? Nisha created a video in aid of Down Syndrome awareness which provided me with so much comfort:
Here’s Nisha’s reflection on “Down Syndrome: The Perception vs The Reality”:
Kush, age 4, post natal diagnosis a few hours after he was born.
Life couldn’t be more different from what I thought it was going to be like when we received the news to what we are living now. Kush is our heart and soul, our pride and joy, he’s changed us all for the better and brought our family so much closer together. I love him so much it hurts and it makes me sick to think I would have contemplated termination had we received a pre natal diagnosis – only because of pure ignorance to the condition and what it really means. It can take Kush longer to do things than other children. That’s it!! He can still do everything and proves everyone wrong everyday. Don’t get me wrong, it can be challenging at times, our path is different and I still have the occasional down day – but which parent doesn’t? As far as I’m concerned our family are living a “normal” life which I didn’t think I would be able to do when they told us Kush has Down syndrome. I would urge anyone that may have had a recent diagnosis not to think too much about every tiny little thing, don’t google things, don’t listen to medical professionals who will always give you extreme information, speak to parents of children with Down syndrome, as many as you can, there is lots of help and support out there!
I love this woman so much. I remember speaking to Sarah on the phone and her saying “Harps we only live once, we may as well f*king enjoy it!” It’s true. Every day we have the choice to be happy or sad. Sarah has contributed massively in raising awareness amongst health professionals through her blog “Don’t Be Sorry” and has recently been all over the news in encouraging the use of appropriate language when delivering a diagnosis – the word “chance” vs the word “risk” which implies danger and frightens people. There isn’t anything “dangerous” about Saajan or any other child with Down Syndrome!
I’ve taken so much comfort in watching Oscar playing builder with his siblings – something we thought Saajan will never do. They’re a pretty regular family too. More than anything, I have no idea how Sarah manages three babes under 5! Super mum or what?!
Sarah was one of the main pillars of support I had before and during Saajan’s surgery as she knew the journey all too well as Oscar also had to have open heart surgery.
Here’s Sarah’s reflection on “Down Syndrome: The Perception vs The Reality”:
Oscar (Age 5), Postnatal Diagnosis – we had screening and were considered low “risk”
When I first had Oscar I’m ashamed to say, I had a preconceived idea of what a family who a had child with Down Syndrome in it, looked like. I thought they’d always be sad. I thought they’d never laugh again and I thought the future looked pretty bleak for them if I’m totally honest. I’m ashamed to say this because before I had Oscar I spent an hour a week, teaching dance and drama to a bunch of kids with Down Syndrome. And all the while I would come out of that class, my heart bursting with love, admiration and pride for how brilliant these kids were, when I fell pregnant with Oscar, my first child, I had wanted everything to be perfect. If I’m brutally honest, I didn’t want a child like that. I didn’t want Down Syndrome.
Hearing myself say all this out loud now makes me feel very uncomfortable. Because although I knew these particular kids were amazing and I’d seen first hand that their families weren’t sad, went on holiday (Yep that was one of my other warped impressions… that families who had a child with Down Syndrome in it, didn’t go on holiday) and were leading full and happy lives, my main issue, is that I didn’t want “different”. I didn’t want our life to be anything other than normal I guess.
When I finally got over myself, and for the record here, I apprecaite to a lot of people, I’m going to have sounded like a self absorbed idiot for feeling all of the above, I realised that life with Oscar in it, wasn’t all that different anyway.
A few months ago my best friends mum passed away from Alzhiemers. She was young and it wasn’t fair. Just last month my friend found out her husband had been cheating on her and as i write this, another friend is battling cancer. While I’m not likening Down Syndrome to the awful events I’ve listed here, I am popping them all in the same category of …“When life doesn’t go the way you plan it too”. Becasue lets face it, if there’s one thing I’ve learnt in my 39 years of being on this planet, it’s that sometimes we find ourselves on a completely different path to the one we expected.
But what’s my reality now… 5 years on? What’s it actually like living with Oscar and with Down Syndrome? The truth is, it’s a million miles away from what I expected. It’s nowhere close to what I first imagined. There’s no sadness (apart from when he wakes me up at ridiculous o’clock in the morning of course). There’s holidays, there’s laughter and the future? Well bleak doesn’t even feature anymore. Oscar has brought us more joy than we thought possible. He is a loved and valued member of our family and we wouldn’t change a single part of him, for if we did, he wouldn’t be the little man that he is today. Of course Down Syndrome comes with it’s challenges, I’m not saying that life is smooth sailing all the time. But I genuinely believe our lives with Oscar in it, is better for it.
I hope it’s ok to admit all the things I felt in the beginning. It was a process that I had to work through and I’m sure I’m not the only person out there who has strived for perfect. For everything to be normal
If only I’d have realised that to me Oscar IS perfect. And that going to the grave saying I lead a “normal” life is actually the last thing I’d want now. Different really is ok. In fact it turns out, it’s pretty wonderful.
Brody is the closest in age to Saajan out of all the families we’ve encountered with a Down Syndrome baby so far. My heart bursts with joy when I see his tiny face pop up – I think it’s because he reminds me so much of Saajan. Kaley has been so supportive through our journey with open heart surgery as they also embarked on the same journey a few weeks before us. Her support has been invaluable and I’m so grateful! It helps so much to talk to someone that “gets it”.
Here’s Kaley’s reflection on “Down Syndrome: The Perception vs The Reality”:
Brody, 6 months, pre-natal diagnosis
I thought life with a child with Down Syndrome was going to be very scary and sad. Given, I was pregnant and hormonal at the time and Google was not my friend. There was a lot of out dated information that scared me to tears many times. I thought I would be spending my life running from one doctor’s appointment to another, adding in therapies when I could, constantly worrying about his health and his future. I thought a lot about Brody’s future. If he would drive, go to prom, go to college, have a job, get married. I worried a lot about him having a “Typical life”. Now that Brody is here, I know that he was not destined to have a “Typical life”. He is meant to touch people’s lives with his infectious smile, joyful spirit, and undying determination. We are only 6 months in on this journey, and we are already so excited to see where Brody goes in life and see how he uses his life and maybe even a few of his challenges, to touch others’ lives. And while there are still challenges, we wouldn’t trade Brody or his extra chromosome for anything in the world.
Myah is absolutely adorable and is definitely changing the face of beauty by repping for some awesome Insta-shops. Her two lovely mummies do a wonderful job with raising awareness. Myah sure knows how to work the camera! I love watching her on Instagram and see her personality shine bright!
Here’s Ana and Angelica’s reflection on “Down Syndrome: The Perception vs The Reality”:
Myah Flores 14 months, prenatal diagnosis
Top from Instashop @alilsomethingextra
Well we honestly thought it was going to be a lot harder than it actually is. We thought we would spend a lot of time in the hospital. We thought Myah would have trouble learning everything, that we would be dependent on taking her to therapies so that she could learn. Life if the total opposite. Myah was lucky to be born with no health issues. She learns on her own and does everything a “typical” child does. Her development is a little behind but thats ok because she is taking her time. Myah is all smiles from when she wakes up to when she goes to sleep at night. Don’t get me wrong she does have her moments just like any other child but she gives us all the love and kisses that you would ever want. She has shown us that just because you don’t know what a diagnosis is don’t is don’t be afraid to give your child the chance to show you that just because they have a “disability” does not mean the are not able to do anything they put there mind to. Every child is different but this is our how our life is with a child with Down syndrome. We would not change Myah or her diagnosis, she is perfect just the way she is.
Dawn is a mother of 6, an author, a blogger, a gardener of plants and children, and a Down Syndrome advocate. Dawn is doing an absolutely amazing job in raising awareness and often explores different avenues such as Down Syndrome adoption and various health scenarios. Dawn also shares tips on therapies which I’ve found really helpful amongst the community. I love reading the stories that she shares on her blog from fellow Down Syndrome mamas. I also love watching Cedar grow – his signature is definitely his beautiful head of hair! I love watching his siblings dote on him – it reminds me so much of how Arjun is with Saajan.
Here’s Dawn’s reflection on “Down Syndrome: The Perception vs The Reality”:
Cedar, 7 months old, post natal diagnosis.
My son, Cedar, is now 7 months old, he was born December 2016. We had a birth diagnosis and absolutely no idea that he was to have Down Syndrome prior to that. Even his current heart conditions were not noted, despite a level II ultrasound during my pregnancy. We had a planned homebirth as we had no idea that there would be any issues other than a perfectly healthy baby boy.
I always deny testing during my pregnancies because to us, it doesn’t matter what God gives us. Of course, we always assume that we will be given a typical, healthy child, doesn’t everyone? However, with that being said, it was a shock and we were completely blindsided at birth. My husband and I knew something was different about this baby, our 6th child. My husband, I think, recognized that it was Down Syndrome before I did, I just knew something was very different in his appearance and I think I was in denial that Down Syndrome was what my son had.
To answer the question “What life with a child who has Down Syndrome is like compared to what I thought it would be like….” I have to say, I was ignorant and I feared the life we were about to embark on.
I was so very sad when we learned of Cedar’s diagnosis as confirmed by a pediatrician and subsequent genetic testing. I feared the unknown and I cried so many tears. I thought life would be so sad and isolated. I feared that we would no longer be able to do the things we loved to do, go on vacations, hike, and just enjoy life with our brood (we have 6 children, after all). It was the fear of the unknown that was almost crippling at first.
But then….then… I began to dive into the learning phase. I scoured the internet, I learned everything I could. I began looking at my child and realizing that what I thought this life was going to be like, was so very misguided.
Life now is beautiful. My son lights up my world daily with his plentiful and ready smiles. He is the easiest, most laid back baby I have ever had the pleasure of parenting (and remember I have 6). Life is in no way sad, isolating, or to be feared. We do all the same things we did before; we go camping, hiking, swimming, everything we have always enjoyed. The beautiful family I have gained that have children with T21 has also been amazing. When we go out in public we are accosted by people who want to touch his beautiful hair or comment on his big brown eyes. I am actually enjoying the slower pace that is life with Down Syndrome. My son takes his own time, and that is okay, I am enjoying every baby phase knowing he is my last, it’s nice that the stages last a little longer.
Rupi is a follower of the blog and reached out to me just to let me know everything is going to be ok although in the early dark days it doesn’t always feel like it. I’ve been so grateful to the mummies and daddies that have reached out to us to give us hope. 9 years on and Arjen is doing so well!
Here’s Rupi’s reflection on “Down Syndrome: The Perception vs The Reality”:
Arjen, 9 years, diagnosed post natal at 3 days old.
When Arjen was initially diagnosed, I could only think of the worst case scenario. I had very limited knowledge of the condition, as did my family and friends. Life is good, not at all how I imagined. Arjen coming into our world has made our family closer and stronger. Arjen loves to swim, play football, Mario cart (all the things little boys like to do), also loves to eat out. He makes us so proud, he is a much loved son, brother, grandson.
KAREN & CALEB
I was relieved to stumble upon Karen’s page – why? Because it gave me insight in to what life may be like as Saajan gets older and boy do I take comfort in Caleb! If I’m having a down day, I turn to Instagram and I’m instantly comforted by Karen’s page and all the amazing things they have achieved with Caleb. They are such fabulous and dedicated parents and the benefits of their efforts definitely show! Caleb is such a well rounded individual and it provides me with so much hope for our future!
Here’s Karen’s reflection on “Down Syndrome: The Perception vs The Reality”:
Caleb Prewitt, age 10, post natal diagnosis
When Caleb was born, we were surprised by his Down syndrome diagnosis. Monthly sonograms showed no sign of him having Down syndrome, nor revealed his heart issues. Stunned, I made up my mind to get my hands on any information, group or resource out there for parents. We soon became actively involved not only in our local Down Syndrome group, but other local groups for all disabilities. Meeting so many people at first was a bit overwhelming, but we came to appreciate the wealth of knowledge they offered about life with someone with Down Syndrome. Of course, it was all new for us, and took a bit to settle into routines and therapies.
Honestly, i don’t think we really knew what to expect 10 years ago. Mindsets were already beginning to change in the Down Syndrome community about what our kids could be capable of. We worked hard, and kept our expectations high. We never encountered people who told us “can’t” or “won’t” – I think that helped set our path to one that encourages Caleb to do his best. We had supportive family, friends and support people (therapists, teachers, advocates, etc.). Issues were faced with a positive viewpoint and helpful suggestions. I totally believe that helped keep us reaching high.
Today, life is good! Caleb is an active, engaged young boy. He has friends and leads a full life. He has learned, and continues to learn, independent skills that will be helpful as he grows older, and we decide as a family, about life after school. Do we have it all together? Heck no. But we still continue to work on things with that same positive attitude. Our hope is that society allows him a chance to be a productive member in a job or career that he loves (really no different than anyone else), that he has good friends, and remains active in his community. At age 10, we are halfway through school, and have our sights set on poss-ABILITIES.
As many of you may have, if you watched the programme by Sally Phillips “A World Without Down Syndrome?”, you may recognise Hayley and Natty. It was in our early dark days Hayley reached out to me – more than anything I found her words that she spoke with Natty present on the documentary so moving. She’s a Down Syndrome advocate who has thrashed may misconceptions – I love watching Natty on Facebook live, she has such a huge personality and with the guidance and love of her parents and support network, she’s doing so well! Natty is also a model changing the face of beauty.
Here’s Hayley’s reflection on “Down Syndrome: The Perception vs The Reality”:
Natty, short for Natalia Hope is 10 years old. Down’s syndrome was identified around 5 hours after she was born, along with a heart condition. We had refused invasive antenatal screening as I had had 5 miscarriages previously.
Life with Natty bears absolutely no resemblance to the outdated stereotypes that tumbled through my head when she was born. She is beautiful (she’s also a model), bright, feisty and funny and has been our greatest teacher, showing us how to live in the moment and enjoy the finer details of life. She has opened up a whole new wonderful world and introduced us to the most amazing people. I would not change one single thing about Natty, even if I could.
I would not change one single thing about Natty, even if I could!
Kendell is so bloomin cute it’s unreal! I love watching this family do regular things such as hanging out at the beach, going to church and just being a family. I sometimes forget that Kendell has Down Syndrome as they’re just living life like a regular family!
Here’s Rachel’s reflection on “Down Syndrome: The Perception vs The Reality”:
Kendall, age 2, prenatal diagnosis
On December 9, 2014 I found out that my second child would be born with Trisomy 21. I have often wished I could go back to that one moment in time, as tears streamed down my face, and tell myself that my life was about to change in more amazing ways than I could ever imagine. I would reassure myself that I would learn to love with unconditional fortitude. I would experience pure joy and happiness from this child. His big brother would be his fiercest protector. My circle of lifelong friends would exponentially expand so quickly that I would never be alone in this journey. I would tell myself, “This is the best thing that will ever happen to you.”
I found it really comforting to speak to Sarbjit being from the same community. I often wondered if Saajan would be ok at the Gurdwara – would he be that child that everyone stares at? Sarbjit’s words and experience with Gian has really helped me to put those worries at the back of my head! Gian loves to go to the Gurdwara and if he doesn’t go for a while, many people ask where he is as his presence is missed. Sarbjit works so hard to raise awareness for Down Syndrome and autism.
Here’s Sarbjit’s reflection on “Down Syndrome: The Perception vs The Reality”:
Gian Singh, age 6, post natal diagnosis
Moments after I realised Gian may have down syndrome I looked at this bundle of joy and knew with the strength and love we have as a family Gian will have the best life possible.
When I came home with Gian from hospital I had a moment to myself in my bedroom. The rush of emotions of grief, lost dreams and the why me questions hit me as I looked at his cot all ready for him to be laid in. I needed to release this emotion to fully provide my Gian with endless love and support. I had a small period of depression. I was fighting with my initial feelings of Gian’s future and worries about his health. I wiped away those tears and kept being the best mum for my children.
My husband and I didn’t see Gian as special but nurtured him the same as we did to our eldest two children. Yes Gian had challenges but so do all children. Gian was recently diagnosed with Autism but these labels don’t define Gian just helps us to understand how to support Gian.
Gian has the most amazing laugh and a beautiful personality that fills our family and friends lives with so much enjoyment.
KATIE & SUTTON
Katie reached out to me to share her story after we’d originally published this blog post. I’m so glad that the message is being sent near and far that Down syndrome is nothing to be fearful of!
Here’s Kate’s reflection on “Down Syndrome: The Perception vs The Reality”:
Sutton, prenatal diagnosis
I just wanted to share with you our prenatal story of our sweet boy, Sutton (which I have attached below). We were absolutely terrified at first being so young. I was 24 years old and my husband 25 years old. I hope that perhaps our story can help younger parents like ourselves realize that having a child with a diagnosis of Down syndrome is not scary. I wish I could take back the days I spent upset, but I do believe I needed that time as well to accept it. I want to be the story that another young mom can read to let her know that her future is so bright and the love that she will feel for her sweet child is unimaginable! I hope to be the story that I could have read instead of all of the negative articles that are on the internet that tell you what your child will not be and can never do. There truly is nothing down about it and we are the lucky few! 💙💛
TAMARA & GREYSON
Given Greyson wasn’t born so long after Saajan, Tamara is someone I’ve been able to share some of my deepest and darkest thoughts with and vice versa. Where the others have been my light at the end of the tunnel, Tamara and I are very much at the beginning of our journey. Where some days are great, other days are still a period of acceptance. I’m grateful to have met Tamara as having someone that is experiencing some of the same emotions as you at the same time is really comforting and eases the guilt as you realise it’s completely normal to feel wobbly some days as is often the case when something unexpected happens.
Here’s Tamara’s reflection on “Down Syndrome: The Perception vs The Reality”:
Greyson, 3 months old, positive NIPT but didn’t get confirmation until after birth.
My original fears were for Greyson’s health. My next was what our future would look like. However, I’ve learned that even if we had a typical child, we don’t know what the future holds. Having Greyson has changed the way we think and the way we see the world. We learned that having Greyson has far exceeded our expectations and we know he will continue to exceed our expectations in the future!
Thanks again to all the families that participated in putting this blog post together. Much love.
If you’d like to share your story with others and be included in this post in hope of making a difference, please email me at Harps@BabyBrainMemoirs.com.
Do you know anyone with Down Syndrome? Have they thrashed any perceptions you may have had?x
I started weaning Arjun when he was about 4.5 months old. I was super excited as he was my first and was so eager to get on with it! It’s so different with my second, Saajan, for more reasons than one. Firstly, he has Down Syndrome. Down Syndrome often means low muscle tone which means they take a teeny tiny bit longer to develop gross motor skills such as head control, paced swallowing and sitting up all of which can impact weaning. It also results in a delay in the development of fine motor skills which is the use of the hands and fingers so can impact when a child can pick things up. Secondly, I wasn’t in any rush for my baby to grow up this time! Thirdly, he’s a superhero – he’s recently had open heart surgery and that’s sets him further back a little.
At 6 months, we decided it was time to begin our weaning journey and to start introducing new textures tastes and shapes, one month post op. I’ve always deep down felt as though Saajan is going to be a foodie and that makes me excited to embark on this journey!
I’ve had my concerns around weaning Saajan especially as he’s not sitting up and isn’t close to just yet, he also hasn’t quite found his footing with his head control yet and can be a little wobbly. I’ve been working with our local Speech & Language Therapist (SALT) and the ones at The Royal Brompton in establishing the best way to begin weaning. Thankfully, we own a swing from when Arjun was born – it props him up high enough to be able to feed him. It was the same swing I began Arjun’s weaning journey in! All the SALT’s I’ve spoken to really felt that weaning would help Saajan especially as thicker consistencies would be easier for him to swallow slower and to master control of the use of his mouth and tongue. I’ve also been concerned about weaning encouraging the outward movement of his tongue but I guess we can’t let that hold us back.
Organix is a well established brand in our house offering variety of healthy snacks – most of Arjun’s favourite snacks are made by the brand. It was therefore only natural that I decided to start weaning Saajan with Organix’s Strawberry and Banana flavoured porridge. I know the usual protocol is to begin with baby rice, but judging from Arjun’s experience, I decided to skip straight to porridge! I was particularly drawn to the Organix porridge as it has added vitamin B1.
I’ve adopted the same approach as I did with Arjun – we first introduced breakfast, once we’re good with that, we’ll then begin introducing lunches trying the same flavour over a few days before introducing dinners. If you’d like to read more on our vegetarian weaning journey approach from past experience, you can do so here.
The first time we fed Saajan, I used a watered down version of porridge as I felt he’d be more familiar with it. He took to it well and gulped down about 14 spoons! I noticed the following few days, he wasn’t as keen and decided to blow raspberries instead! I decided to thicken the consistency and it worked! He definitely prefers it a little thicker and it also helps with his tongue control when it’s not as watery.
After 4 days of just porridge for breakfast, I decided to introduce finger food – a ripe banana. Saajan isn’t quite there yet with lifting food from the table and towards his mouth but I know with perseverance and in time he’ll get there! Arjun and I helped him and he absolutely loved sucking on it!
As time progresses, the plan is to introduce further flavours – predominantly vegetables to begin with over fruit (who doesn’t have a sweet tooth?!) and will be following a similar regime to that of Arjun’s weaning journey just on the scenic route taking our time and letting Saajan guide us.
In the mean time, here are some tips for 1st food adventures with Organix’s #NoJunkJourney!:
Do you have any weaning tips for us? What were your baby’s first flavours?
Disclosure: this is a sponsored post either in the form of remuneration or a free product being sent to us for review however all thoughts and opinions are our own.
Thank you for your messages of concern – asking if all is ok as we’ve been MIA … things have been a little crazy here … what a journey!
I really don’t know where to start – I guess the best place would be with Saajan’s Trisomy 21 diagnosis but the truth is, I’m just not there yet. I’m not ready to open up to the world about those initial few days, weeks and months that he was born. I’m not ready or strong enough to relive that pain and anguish from that day. I hope one day, I will be.
You may have noticed that we’ve been pretty absent from social media over the last few weeks. What I AM ready to share with you is that we had to face every parent’s nightmare …
Our precious little gift at his tender age of 5 months had to undergo open heart surgery.
We decided to keep it to ourselves till now as everything happened so fast and as a family we were still coming to terms with the whirlwind that is life!
This post is definitely going to be a little jumpy and ridiculously long so apologies in advance! It’s open, uncomfortably honest at times and very raw. It was written as we rode the journey.
Before I start, I just want to say a really huge thank you to our family, friends and blog readers for your prayers and well wishes always. Keep the prayers coming!
Here goes …
We were still coming to terms with Saajan’s diagnosis but we were in a much better place – we were looking forward and doing things like a “normal” family. Things were good, they were getting better. We were all as close as ever. Things felt nice. I felt happy. We’d booked our first holiday to Punta Cana for mid May – our first break away as a four where we could just be a normal family away from therapies and hospital appointments and fears and worries.
When Saajan was born, he had an echogram to check that his heart was working ok. 40% of all babies born with Down Syndrome have a heart defect which often requires surgery. We were the lucky ones – our scan came back clear. My only source of comfort at that time was that our son hadn’t been born with any health problems. We were told we’d receive a follow up scan in a few months just to be sure.
I didn’t hear back for months and a part of me thought “he was fine when he was born, he’ll be fine now! Do I really need to chase for a follow up appointment?!” I decided I’d better to tick it off the list. After a long three hours to’ing and fro’ing between departments, we finally received an appointment for a month later.
To be honest, I didn’t even think about the follow up scan. I wasn’t worried. The thought never crossed my mind that something could be wrong. I had the reassurance from his initial scan.
Frustratingly, when we arrived for the appointment we had, we were told it had been cancelled as the doctor was on holiday. Great! A wasted day off on Preetam’s part – annual/unpaid leave has become more precious than ever now with so many appointments and therapies (I’ve been told these calm down as your child gets older!).
We then received a new appointment for a month later. Saajan was now 4 months old. It was mid April, I don’t remember the date exactly – it was a hot day. A really hot day. After a pub garden lunch, we headed to our appointment. We excitedly chatted about Punta Cana and how we’d get down the suitcases from the attic once we got home from the appointment to start packing.
We entered the hospital oblivious to what was about to unfold. As we entered the doctor’s room, I felt a wave of panic but quickly calmed myself down. It was going to be fine. We’ve had our full dose of what tough times life has to throw at us. It’s done. Everything was going to be ok here on in.
How silly was I?
As soon as Saajan sat down and the echo began, the doctor very quickly seemed concerned “I don’t understand why it’s taken so long for this baby to be on my table … He has an AVSD”
A what?!
“So what does that mean? Will it fix itself?”
“I’m afraid he’s going to need open heart surgery”.
At that point, I began zoning out – it felt like the room began to close in on me, I felt like the sound of the doctor explaining, Preetam questioning and Saajan cooing and giggling whilst playing with the probe wire started to become fuzzy and distant.
How could this be happening to us? Where was my comfort now that I had a son with Down Syndrome AND one that would require one of the biggest surgeries possible – open heart surgery? I felt sick. I can’t even describe how I felt.
Withdrawn.
Numb.
Shocked.
The consultant and cardiologist nurse seemed a little concerned about my reaction – a mixture of silent tears and blankness. I couldn’t even speak. They explained what the defect was – Atrioventricular septal defects (AVSD) are a relatively common family of congenital heart defects. They account for about 5 percent of all congenital heart disease, and are most common in infants with Down syndrome.
It basically means there is a hole between the atria and between the ventricles. In a normal heart there is a mitral valve between the left atrium and ventricle and a tricuspid valve between the right atrium and ventricle. Hearts affected by AVSD only have one atrioventricular valve.
I’m so grateful to be embarking on this journey with Preetam. My moments of weakness are his moments of strength and vice versa. We always say that if we were going to embark on this journey, we are so glad it’s with each other.
In my shell shocked state, I wasn’t able to process anything that was going on around me. The words were just noise. Preetam asked when surgery would be assuming we were talking months away. No. It would be imminently within the next month. What about our holiday? The holiday that was meant to give us the time together as a family? The holiday that had so much hope attached to it.
There would be no holiday.
We went from planning on packing for holiday to packing for hospital. My heart was breaking. It felt like a weird twist of fate. It was all made worse by the fact that Saajan was in such a good mood oblivious to what was coming his way. He’s such a happy and pleasant soul.
Everyone would tell me to be positive when we first received Saajan’s diagnosis. I had finally got to that stage. I had finally started to look forward with calm only to be slapped in the face with this news. It’s now tainted how my brain processes things. I’m too scared to be positive. I’m too scared to plan ahead. Knowing that this surgery was a life or death situation, I knew it was something we just had to deal with.
We shared the news with our family who were all devastated but reminded us that it was for HIS benefit. I knew all of this. I just didn’t want to go through it all selfishly. I was worried about how it would impact us as a family going through something so heartbreaking – what if he died? There was a 10% chance of that happening we were told. That was a higher chance than us having a child with Down Syndrome and that happened. I was worried about the emotional and mental impact it would have on Arjun – he’s so attached to Saajan. He’s been through so much already with us living away from home for months prior to Saajan’s arrival and I saw what that did to him and how long it took us to work on that. I was sad that we wouldn’t be going on holiday. I was grateful for the family support – I know not everyone has that and I thank God every single day that we are so blessed.
For some horrible reason, why did it feel like I was thinking about everyone and everything else other than Saajan and the surgery? I feel awful for admitting that but it’s the truth. Perhaps it was because I knew it wasn’t in my control, perhaps I was in denial.
My coping strategy became an avoidant one. Preetam and I dealt with it in the same way. We immersed ourselves in other things. I threw myself in to planning Arjun’s 3rd birthday – something positive. Something I had control of. We spent lots of time together as a family – lots of seaside trips, family movie time and BBQs on the build up to surgery. I tried to put the surgery to the back of my mind as did Preetam. But there were days we’d wake up having hardly slept – the idea of him being put to sleep didn’t sit right with either of us.
My guilt massively kicked in with Arjun where I knew my attention would be unevenly divided when Saajan was in hospital. His nursery key worker also mentioned that he was missing me in general (hard work sharing your mama!) so I started doing things with him one to one once a week – we visited Chessington World of Adventures and had so much fun, went to soft play, went shopping. All the things I always feared, I suddenly had an urge to do. Things that I would never have imagined doing alone, we did. Silver linings hey?
Surgery was scheduled for Saturday 26th May but as some of you may have seen on Instagram, Saajan developed a horrible cough which lasted 3 weeks – he stopped coughing literally the day before surgery was scheduled.
As desperate as I was to get it over and done with, after a discussion with the surgeon, Mr Guido Michielon, on the phone, we agreed it would be best to hold fire and it was rescheduled for 6 June. I felt pretty frustrated.
May 26th worked so well with Preetam’s work commitments, my sisters chunni ceremony (24th June) and Arjun’s 3rd birthday (26th June). 6th June really felt like we were cutting it fine. It wasn’t that Saajan wasn’t a priority. No. Not at all. It was more that I wanted everyone to be able to enjoy their happy moments without it being tarnished by something going wrong. I asked about delaying surgery by a few weeks at least so that we could celebrate Arjun’s birthday together as a family but Mr Michielon didn’t recommend that. That took away any other worries I had. It sounds pretty selfish typing it out aloud, and I know a lot of you will probably think I’m a pretty crap mum. But actually I felt so torn – I wanted this to have a minimal impact on Arjun too. He’s been crazy excited about his Paw Patrol party for months and I didn’t want anything to change. I obviously wanted Saajan to be ok but for some reason I kept deflecting from the surgery.
It was strange. I’m usually a talker. Motor mouth is putting it mildly! But I just couldn’t find the words and nor did I want to keep going on about it. I wanted to block it out. I didn’t google his condition, I didn’t want to know every single detail about the operation as I didn’t want to stress myself out. I left that worry to the surgeon and his team. My Michielon instilled me with so much confidence when I spoke to him. My behaviour was odd. Almost unrecognisable. I didn’t recognise myself. I figured it was pointless stressing about it beforehand as it wouldn’t make a difference to the outcome. I just prayed.
Where you have nothing else, you have prayers.
God is and always will be my saviour. I trust every single decision he makes even when I’m mad at some of them 😉
In between us finding out about Saajan’s heart defect and surgery, we visited the Royal Brompton where his surgery would take place to have tests carried out before hand. They noticed that his lungs were also working very hard. He had two holes in his heart. One larger than the other.
I’m so grateful to the online community, I have received the most phenomenal amount of support. A really special thank you to Sarah at Don’t Be Sorry who has literally held my hand since we found out Saajan had Down Syndrome. Her gorgeous son Oscar also had open heart surgery 5 years ago at the same hospital so she was able to prep me – it made a really huge difference to my expectations and the way I managed things. A huge thank you to all the other mummies blessed with a homie with an extra chromie that also sent us lots of love, prayers and support on our heart journey especially Life with Brody and Down Side Up
THE DAY BEFORE SURGERY
The day before we were due to be admitted, I packed our bags and it still didn’t feel real. Preetam and I often spoke about how everything felt really surreal. We spent the evening snuggled up in bed as a family, me trying desperately hard not to torture myself by thinking “this could be the last time we are sat here like this as a four”.
Although the Royal Brompton offers accommodation for families of patients in PICU across the road from the hosptal, Preetam suggested we book a hotel for the week so that Arjun, him and I could stay together and make it a little bit like a holiday for Arjun so he wouldn’t feel it as much. We booked The Rembrandt in South Kensington – I’d highly recommend it for their fab vegetarian breakfast options, the brilliant location (opposite the V&A in the heart of South Kensington), super accommodating staff and for their top customer service.
The morning of the day we were due to be admitted, I spent going in to town with Arjun to return a few things. I made lists for his party and contacted suppliers. I found my behaviour really odd and tried to fight it. But I couldn’t. So I let it ride. That’s one thing this journey has taught me – be kind to yourself and ride your emotions.
I don’t know why I didn’t spend all morning with Saajan. Was it because I was scared of feeling too attached? I don’t know. It wasn’t conscious though.
We were meant to be at the hospital by 2pm but I received a phone call just as we were getting our bags ready to say that there were no beds available. I panicked and was filled with anxiety. I knew this meant there was a possibility that surgery would be cancelled. I couldn’t handle that. I was ready to face it. I didn’t want to have to go through all this again. I didn’t realise how common it actually was for surgery to be cancelled till I met other parents – some parents had had their children’s surgery cancelled 5 times! What a rollercoaster!
We received a phone call at 3 to say they now have a bed and to come by 5. Phew! I knew this didn’t guarantee surgery would take place but I was hopeful.
We loaded the car and grabbed a late lunch on the way to the hospital. It felt much different to driving to our local hospital. It felt nicer. A bit brighter. I really can’t explain it. I felt calm and trusting of the professionals. It’s the world’s second best hospital for the heart and lungs. How lucky was I that my son will be operated on and taken care of there?
We arrived at the hospital and were greeted by a lovely friendly nurse called Emma. I love how “in to babies” many of the nurses are. It made me feel like they genuinely cared about Saajan. That it mattered to them. She told me her brother had Down Syndrome – it made me feel like she “got it” a little.
They took Saajan’s obs and he had a chest X-ray and ECG – all the pre operative tests that were required. They measured his length – 66cm! That’s a whole 9cm in the last 4 weeks! Who said DS babies are shorter?! 😉 Saajan also decided to roll over to his side for the first time too that day! It was such a proud mummy moment!
I was quite nervous about taking Arjun to the hospital because he usually hates hospitals and going to the doctors – who doesn’t?! But he actually loved it there. There was a small play area in the bay that we were on and he kept saying “I want to stay here today mummy. I don’t go home” lol. He was so well behaved and I was so proud of him.
Harv arrived at the hospital straight after work and managed Arjun – they visited the playroom and Arjun was right in his element! She also stayed with Saajan as we took Arjun out for a quick dinner. It was really important to me to have some quality time with Arjun while we were away from home.
I really don’t know what I would do without my sisters. They always make the hardest situations bearable. They are our little rays of sunshine (and they’re always armed with treats which helps!!!).
When we returned, they needed to draw Saajan’s blood. I knew how difficult this could be from when he was born. It’s hard finding a vein and his blood also clots quite quickly – great if he has a bump or fall, not so great when needing tubes of blood!
Preetam went with Saajan as he’s definitely the stronger one when it comes to injections and needles! I waited patiently for what felt like forever. He came back about 45 minutes later visibly very upset. They had tried to draw bloods from his head 4-5 times unsuccessfully. It broke my heart and I struggled to fight back my tears. I can only imagine the pain he was in (I sobbed like a baby when they removed the screw from my head post my fractured skull and it wasn’t nice!). If we couldn’t handle seeing Saajan in pain from them trying to draw bloods, how would we face the next day?!
Preetam and I bathed Saajan. Both boys are daddy’s boys and he adores them so much. We’ve had different journeys with both of them but the end result is the same – they are our perfect blessings and our heart aches to see either of them in pain.
The anesthetist came to see us that evening and explain a few bits. I tried to avoid the risk factors as I knew I’d become obsessed. I wanted to think positively or just not think at all.
I stayed with Saajan that night on the ward. His surgery was scheduled for 8am the next morning. Preetam and Arjun left about 10pm and checked in at the hotel.
THE DAY OF THE SURGERY
Saajan and I had a pretty good night – he slept till the early hours but was nil by mouth from 2am. He was allowed water up until 6am. I’d never given him plain water prior to then. He gulped down a whole 180ml!
I felt anxious about whether surgery would proceed as a few others in our bay had theirs cancelled the day before. I also knew there as a shortage of beds in PICU.
Helen, the night nurse, and I gave Saajan a bed bath with special antiseptic wash. I gazed at his bare chest and realised that was the last time I’d see it scar free. I curbed my thoughts quickly and focused on his beautiful little face instead.
We settled him in his gown to prepare him for surgery. Honestly I think that was one of the most adorable things I’ve ever seen. He looked so stinkin cute!
Preetam and Arjun arrived at the hospital by 7am where we had cuddles and spent time as a family. Saajan was ecstatic to see his daddy and kicked and waved excitedly. He was equally as excited to see Arjun. Goov arrived by 7.15 to entertain Arjun while we tended to Saajan.
We’d explained to Arjun that Saaj would have an “ouchie” on his chest as he’s having an operation. Harv had bought him a book to get him used to the idea (Usborne’s “Going to the Hsopital”) but I’m not sure how much he really understood.
That morning felt like a daze. I was grateful that surgery was scheduled for the morning as it gave me less time to think. I was anxious, really anxious. I had butterflies in my tummy and felt nervous. 8.05 and the anaesthetists came and told us to be ready in 5 minutes.
Suddenly everything seemed to be moving so fast. I remember the sinking feeling in my stomach.
The thought that my baby was going to be put to sleep and I had to watch.
The thought that he may never wake up.
The thought that something could go horribly wrong.
The thought that his precious life was in someone else’s hands.
At that point I really didn’t care about him having Down Syndrome. It was so insignificant. I just wanted him to be ok.
Preetam and I wheeled him down with the nurses and he flashed us cheeky smiles oblivious to what was happening. I was so anxious to watch him be put to sleep. As we walked through the never ending corridor, there were swarms of people in scrubs and what felt like an endless number of theatres. I was in awe. I didn’t realise what a huge operation this hospital is and how many lives they are saving on a daily basis.
We finally reached our destination. They placed the gas mask over Saajan’s mouth and Preetam and I held on to his hands tightly. He inhaled beautifully and didn’t fight at all.
I felt my heart beating faster as his slowed down.
I felt my stomach in my throat and the tears came flooding out as his tight grip around our fingers began to loosen.
I cried and I cried.
He looked so beautiful, so peaceful, so perfect. I love him. I really love him.
Any doubt I had before this was erased in that moment. I cared about nothing else other than him coming out ok from that surgery. They informed us that we should receive a call in about 5 hours (2pm).
Preetam and I clung on to each other in our helpless states – we both knew it was only us that could understand this journey, neither of us said anything but we both understood everything. We are his parents. This is our journey. This is our reality. He is our flesh and blood. He is ours.
We headed upstairs to meet Goov and Arjun. I’m so relieved to have Arjun in all of this – he’s been such a huge distraction and he has no idea. He’s kept us going. I’m also so grateful to the twins – there are literally no words. Goov’s build up to her chunni has been spent on being by Arjun and Saajan’s side. I always feel overwhelmed when I think about the twins and how selfless they are when it comes to our children – they have never treated them any differently to how they’d treat their own. It always resorts me to tears as I feel so blessed to have them. Goov’s priority has been them even when I’ve tried to discuss her chunni plans. I prayed and hoped Saajan would be out before then so that she could at least celebrate properly whether we’d all be able to be there or not. She deserves that at the absolute very least.
We headed back to the hotel where we’d planned on taking Arjun swimming as a distraction. Sarah had advised us to go out and do something to keep our minds busy. I fell asleep so we didn’t end up going swimming..! I woke up feeling confused and like I’d just had a bad dream.
Nope, it wasn’t a bad dream.
This was real.
My son was probably wide open at the chest right now. It was terrifying to know his heart would be on a by pass machine right now. That he wasn’t breathing himself. I also found it fascinating how far science has come and what miracles they can work.
We got ready and decided to head out for brunch. It was a good distraction. Post brunch we went for a walk in South Kensington. There were a lot worse locations we could be in! It had come up to 5 hours and we still hadn’t received a phone call. I began to stress. What if something had gone wrong?
2.15pm …
2.30pm …
2.45pm …
3pm …
3.15pm … I called the hospital, it had been well over 6 hours. PICU still hadn’t heard anything. He was still in theatre. My heart sunk. Why was it taking so long? I began acting out. I didn’t want to talk to anyone, I felt sick. I became snappy. I needed the others to manage Arjun as he was unable to distract me anymore. I just needed to know Saajan was ok.
3.30pm …
3.45pm …
4pm … finally Preetam received a call. We ran from South Kensington back to the hospital. My legs felt like jelly and I felt like I was going to collapse. I felt like something was pushing against my chest and I couldn’t breath. I didn’t have time for a panic attack. I needed to get there. Now. It was the longest 7 hours of my life. Especially the last 2. Goov entertained Arj while we returned back to the hospital. She took him for an ice cream and they went swimming – he was oblivious to what was going on.
We waited patiently in the parent’s room for the surgeon to debrief us while they settled Saajan post surgery. Mr Michielon came and took us to a private room, “is he ok?!” Was my immediate question. He smiled and said “yes”. If you ever have the pleasure of meeting Mr Michelin (for a reason other than your little one requiring open heart surgery!!), you’ll notice his placid and calming nature. It has an immediate calming effect. He explained the surgery to us – it went a little over my head to be honest. Preetam asked a few questions (he’s the technical one).
Overall the surgeon was happy with the surgery. It ended up being more complicated than anticipated. He described how they repaired the defect – I was in awe of their knowledge and ability to think on the spot. Saajan’s heart is the mere size of a walnut. To perform such intricate surgery is an art. How could I ever repay this man and his team for saving my child’s life? What a job. It beats an office one any day – you go to work, play superman and by the evening you’re eating dinner around the table with your family. Amazing!
He was pleased with Saajan’s immediate condition post surgery – he was on the lowest dose of medication. “That’s our boy!” We thought They felt he’d be able to be extubated that same evening when he woke up. We were so excited.
We were finally able to see him. I couldn’t wait. I was so glad Sarah had shown me pictures of Oscar post surgery so I knew what to expect. It may have come as quite a surprise had I not. There are lots of tubes, wires and machinery and it could be quite daunting.
We saw him through the window looking so peaceful. He looked so sweet. So pure. We were relieved to be reunited. He was still heavily sedated and sleeping peacefully.
I was relieved to meet Nektaria – his nurse for the remainder of the day. I immediately felt at ease. These nurses are incredible. They possess an abundance of knowledge and the heart of an angel. We spent a few hours with Saajan literally staring at him in awe. How is it that someone so small has endured so much? We were so happy with his progress.
As the evening progressed, Saajan wasn’t showing much sign of waking up. It was looking more likely that they wouldn’t be able to extubate him that day but that was ok. It just meant he could rest a little longer. As gutted as I was that we wouldn’t get to see his beautiful eyes tonight, I was just relieved surgery was over.
We met the night nurse – Laura. Another beautiful soul. Laura assured us that if there was any need to, they’d call us straight away during the night. We also asked if they could call us if he showed any sign of waking up as we wanted to be there when he opened his eyes.
I felt comfortable leaving Saajan in the nurse’s care to pop out for dinner with the others. Another great tip Sarah had given me was to ensure we frequently got out while Saajan was in PICU as once on the ward there wouldn’t be much opportunity. I’m so grateful for that advice because during his time in PICU where Saajan had 1 to 1 care, we made sure we popped out for lunch and dinner – it was a break for us and also family time to focus on Arjun. Having the twins with us the whole way was also a good distraction. However the daily Nutella waffles (comfort food) definitely haven’t helped my waistline!!
We went to sleep really content and happy that night. I couldn’t stop thanking God and thinking about the amazing people that had made this possible. Life felt good. It felt positive. It helped having the twins stay over night with us that night. The doctors had warned us that the first 24 hours are critical and that we could be called in any time. Not having the twins around would have made it difficult to rush to the hospital had we needed to with Arjun. We were so grateful to have them.
DAY 1 POST SURGERY
I woke up the next morning and called the hospital and was panicked by the news. Saajan had woken during the night but immediately his heart rate and temperature shot up and they were forced to sedate him and give him medication to paralyse him to bring the heart rate and temperature down. I was heartbroken and so worried. He must have been so scareed when he woke without us there. 🙁 Parents are not permitted to sleep the night in PICU.
We were told that Saajan would be monitored and their main thing was to keep him stable. They were waiting for him to wake up to see how he was this time around.
We quickly got ready and had a quick breakfast and rushed to the hospital. Literally as we’re rushing to his room he began stirring – it was like he waited for us. He briefly opened his eyes and clenched our hands. It felt so nice to feel life in him again. My heart felt full. My beautiful boy was waking up.
By mid morning, he was opening his eyes more frequently and moved from fully assisted breathing (BIPAP) to CPAP where he was able to breathe a little by himself. I was so proud of him! As I gradually saw the statistic on the screen show his level of breathing vs the machines support, I was literally doing a silent happy dance. I was so desperate to see his smile and hear his little voice again. I missed it so much. It was hard to see him cry without any noise because of the tube.
I decided to get some pictures printed to place in Saajan’s bed so he could see us always – one of Guru Nanak Dev Ji, one of us at the seaside and one of him and Arjun. I also got Arjun one printed of Saajan to keep with him.
By the afternoon, he was ready to be extubated from oxygen. I was nervous for this as I figured he’d probably struggle for a few breaths and may splutter. But it was a huge milestone.
It was a relief to hear his little cry. His voice was hoarse but the familiar sound of his tiny voice gave me so much comfort. He could cry freely. He was still really sleepy. We were so desperate to see him smile. We missed his voice – he’s our daily alarm clock in the mornings, the sound of him babbling and giggling is the sweetest sound to wake up to.
As the day progressed the nurses noticed that Saajan’s heart rhythm was flipping between nodal (abnormal) and sinus (normal). This is basically where the heart electricity supply is being generated from the centre because of the location of the AVSD (nodal) instead of the upper right side where it should be (sinus). His heart rate had also accelerated (up to 180).
I panicked.
They placed Saajan on a temporary pacemaker to regulate his rhythm. That then became the focus – to fix his arrhythmia. I was told it’s a common complication post surgery and should settle. I couldn’t help but worry. We were told that if it didn’t fix itself, they’d try medication and if that didn’t work, the last resort would be to fit a pacemaker. I felt a little stressed and sad. As we took a step forward, it felt like we took two back. I realised that I needed to take a moment at a time and pray for the best – that was the whole reason he was in PICU.
It really helped to be surrounded by three other lovely families. By the end of our stay at hospital we’d become like one big family. You’re all going through the same or similar journey and everyone “gets it”. We had so many laughs and we were there to lean on each other as we rode the hurdles together. I was praying for every single child there. The view from our bay also helped!
As Saajan had been extubated, although he still had several tubes in, we made the decision to allow Arjun to come and see Saajan. I’d shown him pictures the night before and he was ok. We spoke about the operation and although he didn’t comprehend the whole thing he knew Saajan needed the doctors help to be fixed. I also wanted him to understand that mummy and daddy weren’t missing as they were out having fun – Saajan needed us right now.
He arrived bushy tailed and very excited to see his little brother after spending the afternoon at Harrods with Goov. He came bearing gifts for Saajy excitedly. He was a little taken a back and quiet. He tried to take in all his surroundings and I quickly bought in the book that we’d been reading to him relating the situation back to that. He warmed up and started talking to Saajan.
Though Saajan was still in and out of sleep, he responded to the sound of Arjun’s voice and it was a really moving moment. Arjun soon became distracted by the playroom at the hospital (the staff were amazing) with the twins on hand to take him.
He came back to say goodnight to Saaj as we were about to leave and just as we were leaving the bay, Arjun broke down “I want Saajan, I need Saajan to come home” Preetam and I both broke down. We all felt each other’s pain – a common pain, one that only we could understand – we just wanted to be reunited as a family again. Arjun cried from the pit of his stomach loudly. It was so heartbreaking as a mother to have one in hospital, and the other emotionally distraught. I just wanted to fix things for both of them, but I was helpless. On subsequent visits, Arjun was much calmer and enjoyed spending time with his brother and the others in our bay. He also became a pro at the correct way of washing hands (including elbows!) and would prep the family when they came to visit lol.
DAY 2 POST SURGERY
Saajan had a good night. He was stable and they began to introduce feeds via an NG tube (1ml per kg). His heart rate was also stable as it was being regulated by the pace maker. We found it difficult to sleep that night given the night before. The nurses always made a point of telling us to call if we wanted to know how he was doing – this was our comfort. I didn’t want to be that annoying mum but I always called the moment I woke up. It also helped that Preetam, Arjun and I were all together. I’m not sure how I would have coped alone in the hospital accommodation. I think it would have tipped me over the edge. Arjun was my strength.
Going through the daily highs and lows, it really helped having the twins by our side – they were literally there to do anything we needed be it needing a Nutella crepe (!) for comfort to babysitting Arjun to running home to do our washing. They made a crap situation bearable with some moments of laughs. We’re forever indebted to them. The boys are so lucky to have them.
I walked to the hospital daily from our hotel – it was about a 15 minute walk but I absolutely loved that part of my day where I got to enjoy the beauty of Kensington. Our hotel was located opposite the V&A which boasts such beautiful architecture. I loved taking in the morning hustle and bustle. I loved seeing all the cute cafes (some of which we visited when popping out for a break from the hospital). Admiring the large proud front doors – I had serious front door envy! And just generally inhaling the beauty of London. This was something I’d never have experienced had we not been going through all of this with Saajan. I took any opportunity I had to walk during our stay because I loved what I saw at every turn. I had no idea how beautiful London was till now – it has everything I look for when we go on holiday (predominantly food choices haha!). Silver linings – taking the beauty in each and every moment.
It was such a great suggestion from Preetam and made such a huge difference to our stay and experience as a whole.
It also meant that Arjun was occupied – we weren’t going to let a rubbish situation destroy us. We wanted to make the best out of a bad situation and we definitely did. With the twins by our side, Arjun got to see so much while in London. He went swimming, visited Harrods, The Science Museum, The Natural History Museum, Regents Park, London Zoo and walked the streets of South Kensington.
I was so grateful that if he was going to have surgery, it was at the Royal Brompton for this reason as well as it being one of the best hospitals in the world.
Once we arrived at the hospital, Saajan was agitated. I knew right away it’s because he was hungry. After a few days nil by mouth, his hunger was starting to return. I knew it was hunger more than pain – call it mother’s instinct! He was being a little pickle and trying to pull his drains out. I felt for him as I can’t imagine being hooked up to so many wires and tubes. I also can’t imagine how painful it must be. In a way it was good to see the little fighter back – he looked so precious. We were starting to get our little boy back.
I couldn’t help but feel really gutted during our stay in hospital. Almost every single surgeon, doctor and nurse that took care of Saajan was from outside of the UK. With Brexit coming, what does that mean for our country and level of care?
We got the staff cupcakes that day – it felt pretty insignificant compared to all they did for us and Saajan but it was greatly appreciated.
As the day progressed, Saajan’s heart rate became accelerated again so they decided to give him some medication to stabilise it. He was still shifting in and out of nodal and sinus rhythm. I felt a little gutted and as each hour passed I hoped and prayed it would settle.
That day, while with Saaj, I heard the emergency buzzer go off and suddenly saw everyone run. It was so scary. My heart sunk as I feared what was unfolding in the room next door.
Sadly the baby didn’t make it. My heart felt broken. I didn’t know the family but I can’t even begin to imagine their pain and anguish. It suddenly became very real what a scary place PICU is. There are so many children with so many different conditions and complications – doctors work miracles but sadly not everyone gets to take their baby home. I longed to hold Saajan and cuddle him. I reminded myself that we were lucky he was ok.
During the doctors ward round that evening, she spotted a milky fluid in one of Saajan’s drains. I didn’t know what this meant at the time but as she spoke, Preetam did what they tell you not do – he turned to Dr. Google.
Chylothorax.
As I read up on it, my heart sunk. I felt devastated and terrified. It’s basically when there’s a little tear on the lymph duct during surgery and it begins to build up fatty fluid.
Google told me it was a high risk complication and there’s a mortality rate of 10%. Again, a statistic that wasn’t in my favour compared to the 1 in 100,000 one I had for a baby with Down Syndrome.
They were going to take a sample of the fluid and send it off for confirmation. I deep down knew that our suspicious were right and that it definitely was Chylothorax.
I felt similar to how I did when receiving Saajan’s diagnosis again.
Weak.
Withdrawn
Terrified
Anxious
Unable to communicate with anyone. I wasn’t even able to take comfort in Arjun’s embrace. I just wanted Saajan to be ok. I wanted him to be alive.
This day was the worst one during our whole stay in hospital. The combination of witnessing a family lose their precious angel plus a list of complications post surgery really took its toll on me. I wasn’t able to cope well that night.
DAY 3 POST SURGERY
I didn’t sleep all night and called the hospital a few times during the night. I cried a lot that night – a pain that I couldn’t even articulate, a fear that grew with each breath that I took.
Arjun would kiss Saajan’s picture good night every evening and every morning. That night, I slept with Saajan’s picture next to me and uncontrollably sobbed throughout the night. I felt mentally and emotionally shattered. My stress began to manifest physically – I had tummy cramps and my heart was racing. I physically couldn’t stomach food and the walk to the hospital didn’t feel as beautiful as it usually did.
By the time I reached the hospital (it felt like forever), they had the lab results – it was confirmed. He did have Chylothorax. The plan was to put him on fat free milk for four to six weeks to give the tear a chance to heal. I’d read about how children had become malnourished and was terrified of what this meant for Saajan, I also knew I had no other choice.
I was informed that most children hate monogen (fat free milk) and that he was unlikely to take it orally so may need to be tube fed.
The Speech & Language Therapist (SALT) visited us to watch Saajan drink his milk. She felt he may have some feeding issues which was yet another hurdle to cross. I felt a ltitle frustrated as I wasn’t sure where my focus was supposed to lie – on the Chylotohrax or his feeding. I wasn’t capable of doing both. She felt he would be better solely tube fed. Mother’s instinct dictated otherwise. Thankfully the doctors also agreed with me – they were keen to continue Saajan on the bottle and not regress to tube feeding.
He took his first and second bottle fine but by the third was refusing it orally so we switched to tube feeding. It really felt like we were going backwards.
As each day unfolded, it felt like we were presented with a new challenge.
DAY 4 POST SURGERY
We called hospital in the morning – he was still flipping between nodal and sinus rhythm but they assured me this is common and it should settle.
His drain was leaking a lot less – I was thrilled! He’d gone from draining 100ml and 90ml, to 50ml and 35ml. I prayed hard that the monogen would work. They struggled to feed him by bottle during the night, so tube fed. I was pretty adamant on getting him off the tube and back on the bottle.
Saajan was so emotional when he saw Preetam. He was a lot more alert now – he craved a cuddle but we weren’t able to because of the drains. He was pleased to see his grandparents and Pua too who were relieved to see him.
It was our nurse’s birthday that day, so our bay decided to get her a cake to celebrate – where we’d probably choose to take the day off and celebrate, she chose to come in to lookafter Saajan. We were so grateful.
The tubes visibly looked like they had a lot less fluid in them and I felt much better and hopefully that day.
Saajy was pretty grizzly that day – Shamim, the night nurse, had an instant soothing touch and was able to calm him almost instantly. Saajan loved her!
DAY 4 POST SURGERY
We called the hospital that morning – you know you gave birth to a little superstar when the nurse says she wants to take your baby home as he’s so sweet and such a good boy! Actually that was a common trait amongst most of the nurses – they commented on what an easy patient he is!
He was doing really well, he’d been in sinus rhythm for 24 hours and they’d taken him off his heart rate medication and he was coping well though it was creeping up.
We were also able to have his drains removed that day as they were pleased with the chyle clearing up. We were able to hold our baby boy for the first time since he had surgery and it felt so good! We had lots of smiles and giggles and it felt like we had our boy back! It was definitely an emotional time and it was such a huge comfort seeing how much calm Saajan took from our embrace.
Preetam was also able to feed him about 30ml from a bottle orally. Progress!
Towards the evening, the doctor was concerned that his leg looked a little swollen and they suspected he may have a blood clot. ARGH!
By this time, the other families in our bay were also further along in their journey and everyone was a little more settled. We all became like one big family. We were lucky to have such a fab bunch during our stay. As some of the others were ready to leave, it felt very bitter sweet. We’d all been in a pretty horrible situation, but we had some really fond memories too.
DAY 5 POST SURGERY
By the sixth day in PICU, all our friends had left. It felt really sad. We were thrilled that they’d moved on in their journey but it felt really lonely and quiet. Time seemed to pass a lot slower too. We were also grateful that Saajan was stable too and that the biggest concern was now his feeding.
We were torn between the doctors and the SALT – the SALT was encouraging tube feeding where the doctors were adamant on ensuring he got back on the bottle. The predicament was the taste of the milk we believed.
To test the theory, and because they were pleased with the reduction in his chyle output, the doctors weighed up the situation and decided to revert Saajy back on to SMA to see if it was the milk he disliked, or if it was that he no longer liked the bottle. I prayed to God it was just the taste of the milk. We’d never had feeding issues prior to this and it wasn’t an additional battle we needed.
On the SMA, I managed to feed Saajan 55ml and Preetam managed a whopping 95! The doctors were right – it was the taste of the milk.
Given we’d initially been told Saajan would require monogen for at least 4-6 weeks, I felt uneasy about switching back. The doctors felt comfortable that it was the right decision and assured us they’d monitor his lungs and chest.
Saajan was ready to be moved on to the ward however there were no beds available so we stayed put in PICU for another night.
DAY 6 POST SURGERY
After 6 nights in PICU, we were finally moved to the ward to our own private room (because that was the only bed available!).
Saajan was taking his bottle really well and slowly his feeds began to increase. He was super hungry and feeding more frequently. They did a chest x ray the night before and were happy with how it looked.
It was my first night staying at the hospital now that we were on the ward and I felt quite lonely. Perhaps the enormity of the situation finally dawned on me. I found myself feeling very withdrawn and emotional. I missed Preetam and Arjun who had now returned home. I longed for us to finally be a family again.
Preetam put a smile on my face when he told me that him and Arjun slept on the edge of our bed as he refused to let Preetam sleep on “mummy’s side” – it melted my heart!
DAY 7 POST SURGERY
Home time!
The doctor felt they wanted to monitor Saajan for another 24 hours but I managed to convince them to let us go and see as an outpatient instead. I felt he was in much better spirits and going home would probably do him a lot more good than being at the hospital.
They agreed to do his discharge tests and if all looked ok, they’d let him go and see as an outpatient.
All looked good for now!
Saajan’s NG tube was removed and we were finally able to see his beautiful face again!
I felt like I’d been away from home forever.
I decided to surprise Preetam and Arjun with the news that it was home time when they arrived to visit us – I’ve never seen Preetam smile so much! We were all buzzing with excitement. Although we’d be returning to hospital in two days time and then again in four days time, we were all so relieved to finally be back together as a unit (Preetam and I were – not sure about the kids judging by the pics haha!). What a journey.
We are so incredibly proud of Saajan – despite having been through so much since he entered this world, he has a smile on his face most of the time. He has taught us so much in such a short time and as time progresses it becomes more and more obvious why he was sent to us – as a gift, as our teacher. We are equally as proud of Arjun for handling the situation so well, being such a proud big brother and behaving (most of the time!)!
It was a grim situation but I make sure to focus on the silver linings too. The places we saw, we still managed some quality time as a family and with the twins before Goov gets married, exploring beautiful London, widening our horizons in the coffee world by exposing ourselves to more than just Starbucks and Costa! And not forgetting the wonderful people we met – thank you Fiona, Andy, Jane, Dan, Danielle, Saada and all your beautiful families for helping us keen sane while providing us with lots of laugh and cake!
A huge thank you to my sisters for their support as always – they literally are our pillars of support who hold us up at our lowest and weakest moments! There really are no words! A big thank you to their employers for being so compassionate towards our family. To our extended family for all their love and prayers. To the hotel staff at The Rembrandt for being so kind, compassionate and accommodating – for making a difficult situation manageable with the flexibility and brilliant staff, we are so grateful. The boys absolutely adore you!
I can’t even begin to articulate how grateful we are to the staff at the Royal Brompton. They’ve taken care of our son with so much love. The surgeons do the most tedious and pressured job, the nurses provide around the clock care to our precious bundles – missing out on birthdays and family meals working anti social hours.
We are forever indebted to the amazing staff at The Royal Brompton – thank you for fixing Saajan’s broken but beating heart! A special thank you to Mr Michielon and team for saving our son’s life; the consultants and their teams – especially Angela and Victoria for always answering our questions and articulating the situation and course of action so well; Nektaria for being there for all of Saajan’s big milestones in hospital – admission in to PICU, extubation and discharge; Laura for being so understanding and gentle always; Shamim for just being you; Ines, Jess, Paula, Cecilia and Leena for everything! And all the other lovely nurses who go above and beyond every single day. You are all superheroes in disguise!
Saajy & his surgeon, Mr Michielon
NektariaInesLeenaShamim
We love you x
With The Royal Brompton Hospital under threat of closure as proposed by NHS England, we fear for the future. It made my heart sink when I heard the news as it would mean others like Saajan may not be so lucky. I first hand witnessed how under resourced and in demand the services there are. Consolidating two trusts could result in detrimental results.
If this plan went ahead, it would also close a range of other services – including the hospital’s child intensive care unit where Saajan was taken care of, it’s world-famous CHD research unit, and a range of child services including cystic fibrosis and difficult asthma. Over 14,000 patients would be affected. The Royal Brompton is one of the largest, safest and most effective services in the world saving thousands of lives.
To show our support, we’ve set up a JustGiving page to help raise money to fight the closure and so that the hospital can continue to invest in machinery, research and staff for pediatric intensive care. Please help us raise money to support the care of babies, children and the families of those in a similar situation to us.
To celebrate Saajan’s new lease of life, we are hoping to raise £5,000 for The Brompton Fountain charity by the end of the year. Once you donate, the money will be directly sent to the charity. It’s quick and easy and every penny counts!
So, my kid has Down’s Syndrome. I never really knew what Down’s Syndrome was, I could easily identify it and tell if someone had Down’s Syndrome but never understood it.
Its basically a scenario where usually at the point of conception the foetus has an extra chromosome (21). Where two chromosomes are expected you end up with three. In most cases having one more of something is usually a good thing. However when it comes to chromosomes it seems the additional results in slowed learning and a few Down’s characteristics.
I am writing this on the evening my second son was born. When he was born I noticed a few Down’s related features but put it down to him being born at 39 weeks. I mentioned the look to my wife who assumed I was implying he looks like her side of the family at which point I just dropped the topic.
Later that evening a consultant came to see us to confirm our son does indeed have Down’s. The realisation of this broke me. I am not a very humbled or religious person, I am driven and focused but tend not to stop and enjoy let alone be thankful for everything in my life. Deep down I am thankful in my own way but I don’t express this openly. Unfortunately I can be quite judgemental with little remorse when something frustrates me. I am adamant my sons additional chromosome was indirectly my fault. I didn’t intentionally cause it to happen. But felt my actions or thought process had led God or the universe to “balance my books”. I felt it was a way for him to punish my wrong doing by punishing my child.
This broke me.
I am far from the perfect husband. In fact, I’m an appalling husband, you just need to ask my wife.
I do however try to be a good dad. Prior to Saajan, my second son, I had Arjun. Arjun has been the apple of my eye from the moment he was born. He brought out feelings in me I thought I never had. We are completely besotted with each other and just inseparable. Arjun is perfect. What’s funny is I see myself in him everyday with his little mannerisms like sticking his tongue out while he is concentrating. The way he just loves to get involved. I feel I’ve always known him, maybe connected with his soul in a past life. Some might say our relationship isn’t healthy as we both suffer from anxiety when we are initially separated but I wouldn’t have it any other way.
So the thought of something I have done or something i simply haven’t done right impacting my child really tore me up. Breaking down randomly, struggling to come to terms with the thought that Saajan isn’t perfect. He isn’t perfect because he has a learning difficulty and has visual signs of Down’s syndrome.
This morning I went home from the hospital to feed our dog who hasn’t been very well. I took her for a walk to clear my head. This is something I’ve become accustomed to doing for years, it’s something about the early morning air, the fog, the crisp breeze that lets you just get lost. I don’t meditate, but this time in the morning really let’s me just find myself.
I kept questioning why this has happened. Is it because of the way I am? Is It the things I’ve done that have caused this to happen to my son? Is god punishing me or us? Why is he paying the price?
Harps brought up a funny point that really makes me hate our culture. People just have a habit of talking about ‘nazar’. This is an evil eye, jealousy. Harps doesn’t believe in this, and nor do I. I don’t believe this exists but the truth is it probably does. That when you have things going right, something will inevitably go wrong. I have everything I could ever wish for. What people don’t see is how hard I have to work for it, often sacrificing time with my family. This aside, I have also been a firm believer that problems are opportunities. So even if things go wrong, I’m keen to just take it all in my stride.
I have no doubt I will do my utter best to be a good dad to both my sons. I just can’t help but struggle to understand why this might have happened.
I came to the realisation that yes Saajan has a learning difficulty. But unlike Arjun and I, he will undoubtably have a much more innocent view on the world. Arjun currently does as he is very young, however as he gets older; If he follows my traits, he might get a little arrogant in his adolescent years.
My experience of people with Down’s syndrome has always been positive. Be it seeing children playing or adults offering hugs or smiles to passers by. Those infrequent experiences give me a very reassuring feeling.
Having a child with Down’s I feel will be a positive thing. Saajan is a gift. Unlike Arjun and I, he is such a special gift. He has an extra chromosome which makes him very special. He has a head start. He won’t feel hate or discrimination. His innocence will last a life time.
I always loved seeing the world through Arjun’s eyes. On holiday or his appreciation for little things. Not a single day goes by where I don’t smile at the things he comes out with. The love he has for his brother melts my heart.
As a family we can all now see the world through Saajan’s eyes. We have been blessed to be able to see the good in everything and really appreciate the world for what it is.
That is something that has been missing from my life. I lack empathy. I don’t always see the good. Recently I feel I have become the first to vent if something isn’t done to my satisfaction. But the truth is, not everyone is like you. Nor is everyone normal. What you do have is people that are very special, like a Saajan. That I feel I am blessed to father, because over our lifetimes I can learn so much from him and become a much better person.
He is a very special soul, Harps thinks he has chosen us to love him and give him the perfect life.
I don’t think she is wrong. He truly is a remarkable soul.
Harps is a phenomenal mum, her health has been up and down. She had an emergency c-section, again. But straight away, I have no idea where she has found her strength but she seems completely un-phased. She is determined to be the best mum to Saajy.
He has a truly amazing big brother. Arjun will certainly keep his little brother on his toes, teaching him to use drills and toy saws! Or the ‘IPad’ to draw with colours.
More so he has amazing aunties and uncles. My sister in-laws are amazing. I love them like my own siblings. Their love for my kids is unconditional, you can see it. The way they drop everything for them, for us. Harvs, Goovy love you both loads! X And Indy! Thank you for being there. Helping us through our day to day.
The truth is, I don’t want Harps to go through post-natal depression again. I’m not one to talk about my feelings or to share how I feel. I just keep quiet, and get on with it. I wrote this so she knows she has everyone behind her including me.
The truth is, I wouldn’t have wanted it any other way. This gorgeous little man is going to change our lives for the better.
X
Hi, I’m Harps, an award winning blogger who shares my journey of motherhood after experiencing post natal depression and an unexpected diagnosis of Down’s syndrome. Readers have often coined my musings “relatable” and “warming”. I have gone on to turn my passion of connecting people into working with brands ranging from household names through to small businesses and sharing with my engaged audience.
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