Down Syndrome Diaries | Down Syndrome & Pregnancy Loss

I very clearly remember the first time Jai messaged me via Instagram, she offered me words of comfort during my lower days of motherhood … What I didn’t know at the time was what a dark journey she’d been through herself.

When I came to know it as time went on and we spoke more, my heart grew a very special place for Jai and her babies because it’s so rare to find people who are so giving and so pure even through their own grief. I know I struggled to be there for anyone while I came to terms with Saajan’s diagnosis

When I first gave birth to Saajan, Jai was one of those people who offered me words of comfort that actually made a difference. She made me realise how lucky I was to have Saajan – every time I have a low moment, i think of Jai and her courage, I think of Jazmine as our little guardian angel too and I am automatically uplifted. Jai did a skydive to raise money for the Down Syndrome Awareness on Jazmine and Jian-Jazmine’s birthday so she could be closer to Jazmine in heaven.

This is one of the most difficult reads that I’ll be sharing, and I’m so honoured that Jai decided to share her story here to raise awareness for Down Syndrome but also of the pain of child loss. I have the utmost respect for Jai for being the incredible woman that she is …

Down Syndrome and pregnancy loss both overlap for me.

Our journey started Jan 2016. I became pregnant with twin girls. It was exciting but also scary knowing the risks that carrying twins can have.

After 2 previous losses, my anxiety was pretty much sky high and I was given scans every two weeks till I hit 12 weeks. We were asked if we would like the NT scan at the 12-week check-up. I had the NT with my Son back in 2014 so thought why not?

When I think back at my NT scan in 2014, all I remember is that the NT scan was to make sure the baby was ‘OK’. I didn’t actually know what that really meant. I actually had no clue that the NT was to help assess whether or not babies are likely to have Down’s Syndrome. I guess my head was clouded with all the happiness of being pregnant again and that I’d made it to 12 weeks.

I guess when you finally get to the 12-week stage there is a relief and it seems like a safe zone, but for us, it definitely was not.

Twin 1 showed an increased amount of fluid at the back of the neck. During the scan, I thought nothing of it until I was told to take a seat in the consultation room.

I then was told Twin 1 may have an increased chance of Down’s Syndrome. The consultant was very certain this was the case. I actually didn’t know what to think at the time I was clueless about it all. I was later told more news that Twin 1 may not make it to 16 weeks because of the results.

I went home overthinking the worst. “No I can’t lose another baby, it just can’t happen”. The next month felt like forever till my scan, not one time did I even think about Down’s Syndrome, I was just praying that my baby would fight and make it regardless of what the consultant had said.

As we hit the 16-week scan it was all perfect and I felt a huge relief. It was all going to be ok; this was the hurdle we had to get over. Not sure what I expected but I thought that meant everything was fine and it would be plain sailing.

With possible markers that showed at 18 weeks, we were heading on a journey which was going to be so different. Was our baby going to have Down’s Syndrome? or was there something else? I wasn’t clued up one bit; I had no idea the depths of what Down’s Syndrome really was. I wasn’t sure how life was going to be, should I give up work? do I start looking for schools?, How will Jaykar understand? How will anyone understand? There was so much uncertainty, confusion and my thoughts were a non-stop train journey.

My main heartache at the time was what if nobody loved her? I wanted the love to be equal between the twins, but what if people looked at her differently and loved her less?

We decided to keep this news to ourselves. I felt any unnecessary stress was just not needed for me and the babies. What I mean by that is that I had no faith in positive conversations if I was to speak of Down’s Syndrome; I knew that certain people would possibly look at me differently and I wasn’t ready for hearing the wrong words.

With some amazing counselling, I was feeling more and more positive about my pregnancy as the weeks went by and most importantly that I was going to cope absolutely fine.

Our 20-week scan was a lot more thorough as Twin 1 required an echo scan and all organs checked. With all the prayers everything was perfect and we were so so happy. The consultant advised although everything seems perfect further tests would be completed once the baby was born.

As we approached 22 weeks, 24 weeks and 26 weeks the babies were looking more and more perfect and I was so excited. We were hitting the third trimester; we were absolutely prepped for their arrival. I’d just gone 28 weeks and was looking forward to seeing the girls on their next scan.

This was the most heart-breaking day of my life. At my 28 week scan, there was no heartbeat for Twin 1, she had passed away. I can’t even put into words how much it killed me inside hearing those words. I didn’t care about anything, I just wanted her back.

After seeing the consultant, he suggested she had passed away because she has downs syndrome. I didn’t understand, all the scans showed she was fine, she was the stronger one, weighed more than twin 2, her echo scans were fine, and she kicked, wriggled, hiccupped and rolled more than her sister. I just didn’t understand anything anymore and I still don’t.

I was then told I had to carry both girls until 40 weeks.

Unfortunately, my body just didn’t cope well. I went into labour at 33 weeks. I had an emergency c section. Jazmine born silent and Jian-Jazmine born screaming 25/08/2016. I cannot even begin to explain how I was torn between my feelings for both my daughters.

A post-mortem was carried out and I saw the words straight away as the first page opened in the consultant’s folder ‘Trisomy 21’. I didn’t wish to speak any more of it. I was just so upset and didn’t understand why she didn’t survive. I couldn’t bear to ask if it was her heart, lungs, muscles, what was it? Till this day I still don’t know, I haven’t had the courage to ask or read the post-mortem in detail.

I shut off for a few months. We began to think whether we should speak of Downs Syndrome and tell our families. So far we had just said there was a chromosome problem, we just didn’t wish to be specific, and I guess we were scared of the reaction and any questions that would come with it.

It eventually built up inside of me so much, I needed to speak of Jazmine, I needed to speak of Downs Syndrome. We then decided after Christmas we would tell our families and I felt I had to do something in Jazmine’s name and to create some awareness. I wanted people to know it was ok and if Jazmine was here there were some amazing support groups and organisations that would help us in so many ways.

I follow so many amazing advocates/families who share their lives through social media. These families speak so positively about Down’s Syndrome and I can’t even tell you how supportive that is. I see how these amazing families become stronger and enjoy all the love their child gives and I will truly miss that with Jazmine for the rest of my life. I absolutely believe she would have changed me as a mother, I would have overcome so many insecurities, anxiety and become so much stronger inside and out.

Jazmine has drawn my heart so close to so many charities and I have amazing ideas to celebrate her name in the future and raise money for all the brilliant charities that help support families.

I am proud to say my daughter has an extra chromosome and if she was here she would definitely be the heart of our family. Down’s Syndrome is not scary and nothing is impossible and this can truly be seen through these amazing families sharing their beautiful children through social media.

 

For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.