‘Living with Down’s Syndrome isn’t the end of the world’

Dexter was born with Down's Syndrome but is now a flourishing six year old who loves Muppets, baking, drawing and swimming.

They found a soft marker for Down’s syndrome at our 20-week scan: a mildly dilated kidney. This is very common in boys, and once the initial shock subsided and we felt that we better understood the statistics, we decided against an amniocentesis – the risk of miscarriage was higher than the risk factor we’d been given for Trisomy 21, a multitude of other tests had been ‘normal’, and anyway it felt like the kind of thing that only happens to other people, right? At 34, it was my first pregnancy and we hardly thought about it again until our little boy was born with a near-perfect kidney… and an extra chromosome.

Other than being six weeks earlier than planned, the birth went without a hitch. Due to my medical history, the birth was a planned C-section, and the mood in theatre was all smiles. My husband took some spectacular photographs just as the baby was lifted into the world and we both shared skin-to-skin moments.

I remember feeling distraught that we might not be grandparents, which seems ludicrous now.

It was later, during the newborn examination offered by the hospital, that suspicions of Down’s syndrome arose. The paediatrician came to tell me that he had sent off for some genetic tests. I was still euphoric and a bit dazed from the Spinal Block and morphine and I didn’t register the significance of what he was saying. I just nodded and smiled. Then I asked him why, and my world folded…

…and slowly started to open up again. While I was a jumble of black emotions, the wonderful midwives and consultants seemed to know exactly when to give us space to confront our new reality and when to drip-feed us up-to-date, balanced information about living with Down’s syndrome today; life prospects, the impact on families, the support available and some of the joys and challenges. Some had stories of people they knew. Meanwhile everyone continued to fuss over the baby and congratulate us and talk about how cute he was. It really helped normalise everything.

I know we were lucky. The Down’s Syndrome Association has built a body of evidence showing that a significant number of health professionals continue to provide information about Down’s syndrome in a biased manner. I am a strong supporter of their ‘Tell it Right, Start it Right’ campaign, which provides study days for healthcare professionals who might have to break difficult news to expecting couples or new parents. Not to understate how nervous we felt at the time, it made a real difference to us to have good information and time to absorb it and readjust – it allayed our fears and gave us a sense of optimism for the future as a family.

The way that medical professionals frame things for you can be very significant to how you adjust and move forward.

In the early days we were in a kind of shock grieving for the baby we had planned for who never arrived. Lots of the DS literature acknowledges this response. But we were also first-time parents to a premature baby we needed to bond with – as well as learning how to change a nappy, settle, feed and bath him. It was an emotional time. I felt cheated and sad and scared and angry, and I cried a lot. But my husband, ever the optimist, always knew it would be ok – and we all already loved this tiny boy with the rock-a-billy quiff and pretty eyes.

Very few new parents spend the days immediately following a birth worrying about what their children won’t be able to do, or the health problems they’ll have, or their life expectancy, or about future pregnancies. I remember feeling distraught that we might not be grandparents, which seems ludicrous now. Someone from a support group reassured us that at least he would never be a thief or a drug dealer, which I remember being really angry at, and resolving to help him follow his dreams, criminal or otherwise! There are so many things you can’t know in advance about who your children will be, it’s nonsense to see a perfect baby as an end-goal. Or to think that a diagnosis tells you everything. In the end, like they said – though it took a while – he transcended his label and became just Dexter, the boy with the world’s most beautiful smile.

Although it’s not what I wished for, living with Down’s syndrome really isn’t the end of the world. Everyone’s story is different but we’re lucky that Dexter has no significant health problems, that we’ve found a strong support network of family, friends and professionals, as well as a lovely school that he loves and loves him right back. Meanwhile I do my best to chip away at clichés, be upfront about the hard bits, and celebrate his achievements with disproportionate volume. That’s my bit for raising awareness. Everything is harder for him and so it’s harder for us. We’re learning as we go, but with a bit of extra help and encouragement, he’ll get there eventually. And beyond.

 I remember thinking at the beginning that I would never be a proud Mum, but I really am, and I never stop telling them so

I realise now that although things don’t always turn out the way we plan or hope, the way that medical professionals frame things for you can be very significant to how you adjust and move forward. Things definitely look different now that Dexter is a flourishing six year old who loves everything Muppets, baking, drawing and swimming. He’s a champion hugger and ‘happy-birthday’ singer. He’s a great big brother and partner-in-crime to Felix, three, and we are a happy family with two boys who make us laugh and cry much like any other. I remember thinking at the beginning that I would never be a proud Mum, but I really am, and I never stop telling them so.

Medicine isn’t an exact science and life is unpredictable, though happy-ever-afters come in many shapes. Maybe normal is overrated! It was scary at the beginning but now it’s just who we are – different and the same. At the very least I’m glad I never had to make a difficult decision. We have our own challenges yes, and our chap may not be the image of ‘perfect’ as you think it, but we could never have imagined how many magical moments there would be, and I know there’ll be plenty more as our two lovely boys grow up.

The character of ‘Freddie’ at Treehouse Number 9 is based on Dexter. Treehouse Number 9 is a musical story app and cartoon series that uses a series of characters called ‘The Genies’ to celebrate and investigate difference in children and raise awareness of genetic conditions. treehouseatnumbernine.org

Downs Syndrome Awareness Week (20-26 March) aims to celebrate all people with Down’s Syndrome and encourage inclusivity within communities. 

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