I wish I knew then, what I know now…

Michele is married to Matthew and she has two children, Lois 9 and Elliot 7. Elliot has Down’s syndrome and they live in South London. This is her story…

I can clearly remember the day I went for my 12 week scan. I’d told Matt not to bother taking time off of work, it was always a long wait at the hospital and the appointments always seemed to be at an inconvenient time, so I went along alone.

Some time into the scan, I could tell from the sonographers face that she was not happy and the trainee sonographer alongside her looked very uneasy. I had done lots of research before Lois’ scans and I could tell that they were focusing on the thigh bone measurement, back of the neck and around the nasal bone so I think I already knew what they were going to say. After the scan, I was taken off to a tiny back room where I was passed by other women looking upset, confused, or openly crying – I definitely knew what they were going to say at that point.

Based on the scan I was told I had a 1:7 ‘risk’ of having a baby with Down’s syndrome but some further testing was required and eventually after various people coming in and out of the room with pitiful looks, I was told I had a 1:2 ‘risk’.

I was immediately informed I could opt for an abortion. For me, abortion was never an option so I was left devastated.

From then on I dreaded each follow up appointment. It was always tinged with disappointment and negative feelings, along with the same pitiful looks I’d received at the initial scan. I think after one appointment I was handed a really dated looking booklet called something like ‘Living with Down Syndrome’ which made it sound like a terminal disease. I didn’t enjoy my pregnancy at all and in the end I cancelled the last few scans because I was always longing for someone to tell me that we didn’t in fact, have a baby with Down’s syndrome and it was all a big mistake. We’d opted early on not to have the CVS test because of the risks involved so even though we had the 1:2 result, it still wasn’t an absolute certainty.

The reason that ‘I wish I knew then what I know now’ is that if I had walked out of that first scan appointment with a picture of Elliot and a short bio of his personality, I would have been elated and jumping for joy at such a blessing. I would quite literally have been punching the air!

We certainly haven’t had an easy ride with Elliot, he had congenital heart disease which resulted in open heart surgery, bouts of pneumonia, and we have the day-to-day challenges that come along with a child who has global development delay. During my pregnancy I actually said to myself ‘I don’t want this baby’, ‘I don’t want a baby with Down’s syndrome’, and to this day I can still feel overwhelmed with guilt for having thought that, it really couldn’t be further from the truth.

Elliot is funny, cheeky, tenacious, very affectionate, loves reading and counting and has some amazing friends at mainstream school who love him very much.

I had never known anyone with Down’s syndrome before Elliot, so I was completely in the dark. With more awareness and inclusion, hopefully that will be a thing of the past. Campaigns like the Down’s Syndrome Association’s ‘Tell It Right’ training, which helps improve the way midwives and other health related professionals tell new parents that their baby has Down’s syndrome are making a huge difference and I hope that receiving a Down’s syndrome diagnosis is different today to what is was seven years ago for me.