Parent Help

Sharing experiences is often a great way to help 'new parents' of a child with Down's syndrome. Below some of our members have shared their experience/story. If you would like to share your story to help others, please email louise@21andco.org.uk


Henry's Story

Henry was born in February 2011. He was 5 weeks early and clearly in a hurry – thereby ruining my plans for a homebirth and giving me my first blue light ride! In pregnancy we had no suspicion that he might have Down’s, but it was very clear to my husband and I when we first gazed on his little face.

In those first hours we were both very philosophical about it – his heart was strong and he was a healthy weight despite being so early. It was only over the coming days that the fear and shock really took hold for me, though my husband bonded with him instantly. Henry was born with Hirschsprungs Disease (a condition of the bowel) and spent his first 5 weeks in hospital – he was taken from me and transferred to Nicu just as I was beginning to bond with him, and that wrench was awful.

The worries I had during that time were overwhelming - I felt that I wouldn’t be good enough for him, terrified of all the things I imagined he wouldn’t be able to do and felt that I’d let my other son down by not giving him a ‘proper’ little brother. I couldn’t even look at the little baby foot ‘Congratulations’ cards that arrived through the post because they reminded me of his sandal toe. I would weep in the supermarket baby aisle because his face wasn’t represented anywhere and remember feeling devasted when I noticed a young man with Down’s looking at dvd’s with his trousers on back to front!

I even suggested to my husband that perhaps we shouldn’t call him Henry after all, that it didn’t seem right for our baby anymore. Thankfully he disagreed, and in the months that followed I came to realise that our baby was always Henry, I just hadn’t known who Henry was!

I got in touch with 21&Co when Henry was around a year old, and it was wonderful to finally meet other people going through the same thing. To hear that everyone had felt the same worries was hugely reassuring and went a long way to helping me quash the guilt I was battling every day. The community and support they offered us was truly a gift and Henry thrived in Tatty’s speech groups. It was also lovely to see the older children running around and chatting, just being children, and it helped me to understand the normality of life with kids like ours.

8 years on, and I can’t begin to describe how misplaced all those preconceptions and worries were! Henry is a little shining light. He has so many friends, a sixth sense for how people are feeling and the cheekiest sense of humour. He adores animals and books and is a demon on his scooter. Both of his brothers absolutely worship him and they have the most wonderful relationship - he brings a perspective to our family that I feel so privileged to experience.

His tummy problems persist (and I admit I would happily wish them away in a heartbeat) but the learning disability itself no longer worries me. Yes, it takes him longer to learn, and yes, he might be at home with us well into adulthood – but then so could any of my boys, and I’ve learnt not to worry quite so much about what comes next. And I no longer care if he goes out in public with his trousers on back to front!