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”
“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.
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?
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.
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).
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.
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.
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
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!
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!
Thanks for reading, lots of love