Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Ante natal   /  Billy


I’m Lu, I have two children through IVF, Nathan is now 9 and Billy 7, who happens to have Down’s syndrome.

Our first round of screening came back with a 1 in 100 chance of Down’s syndrome (DS), we thought those odds were good and we wouldn’t have terminated the pregnancy anyway as we had been through so much to get a sibling for Nathan. We also wouldn’t have had amniocentesis at that point due to the risk of miscarriage.


I was nervous throughout the pregnancy, probably because I knew it was my last shot and I didn’t want any complications. At 30 weeks, duodenal atresia was detected which is a blockage between the stomach and intestines, common in children with DS, so at this point we decided we would have the amniocentesis test, so we could prepare. To be honest I still thought the odds were too high and it wouldn’t happen to us, I was therefore quite shocked when the results came back positive at around 32 weeks! I did have very dark thoughts at that point, I really didn’t want a disabled child, and I knew nothing about DS or disability. I had the out-dated picture in my head of the elderly mother of a badly dressed adult with DS holding his mum’s hand who was pulling one of those old lady shopping trollies!

The midwife who gave us the diagnosis didn’t help matters by giving us an out of date booklet about DS and just said that babies with DS were very floppy and would be difficult to breast feed. And with that I was off to try and get my head around the complete change in our lives. I thought my life was over, my career finished, I though Nathan’s life would be burdened with looking after a disabled sibling. Funnily enough my partner Derek took it all in his stride and reassured me that we would be able to do this! Thankfully for me Billy arrived 6 weeks early, at 34 weeks so I didn’t have too much time to worry, as we had to start being his parents pretty soon after the diagnosis. Billy had a routine operation to correct the blockage as soon as he was born and once he had recovered, he breast fed easily – so all the worry and concern I’d been through had been unnecessary.

I can’t say it has been all plain sailing as it hasn’t, but I do have to say that I think everyone should have a child with DS! Billy attends mainstream school, loves learning and being with his friends and is, in my opinion, enormous fun to be with. The joy that Billy has brought to our lives is definitely unique and his naivety and uncomplicated way of seeing things warms your heart and doesn’t break it. We celebrate every milestone and appreciate life more in many ways. I have come to realise that they are many, many myths about children with DS, you are just told what they can’t do but I don’t listen to them anymore, these kids most certainly can!

Email getondowns@btinternet.com and phone 07967 738045