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   /  Beth


I am Sarah and I live with my husband David and our three girls Hannah (almost 7 years), Beth (4 1/2 years) and Jessie (3 weeks!).   I can remember clearly that lovely time before our 12 week scan when only David and close family knew that we were expecting our second child. I felt tired and a bit nauseas but was absolutely thrilled with our little secret. We had a lovely holiday camping in France with Hannah then aged 20 months and I couldn’t help but daydream constantly about ‘this time next year ……’ It was going to be great, the new baby would be about 6 months the following summer and Hannah 3 years – what fun we were going to have and how blessed did I feel?!!


My pregnancy with Hannah was straightforward and I was expecting the same journey again, albeit with extra experience and I was looking forward to it all. During the scan the sonographer suddenly announced that the baby’s neck measurement was ‘a bit thicker than normal’. This statement blissfully bypassed David but since I’m a nurse, I knew the possible implications of this. I was sent off for a blood test and was told they would ring me tomorrow if any problem. David slept without problem that night but I was troubled. I expected the blood test to confirm that all was ok but doubt nagged at me all night. Walking home from work I received a phone call with ‘private number’ flashing away and I knew that our life was about to change forever. The hospital geneticist was on the other end and after a five minute chat I was left with the knowledge that our baby had a 50% chance of being born with DS. I was shocked and upset but my biggest concern was telling David. We had already long decided that we wouldn’t have a termination on any grounds, and I knew I wanted this baby but I also knew David would struggle with the news more than I. I’m the optimist in our family and I did feel the need to balance my positivity with David’s concerns.

We decided just to opt for regular scans to check how our Beth was progressing, rather than go for the invasive amnio or CVS. Half of me was desperate to know and the other half terrified.

Initially I was very positive; times had changed, people with disabilities could do all sorts of things that were never dreamt of before and I was going to give my child everything she needed to succeed. However, I couldn’t deny that this was not what I had wanted or dreamed about. I worried my child wasn’t going to be able to do loads of things, that Hannah now had a little sister who was going to be a burden rather than a friend, and I feared a loss of the full life that we were lucky enough to enjoy. I worried about how she would be affected by DS, whether she would have a high level of need.

Things became a lot clearer after a couple of coincidences. We were sitting in a park watching loads of kids running about having fun and Hannah was rolling down a big grassy bank. David commented that you don’t see many kids with DS. We discussed the 92% termination rate in the UK and really felt the heaviness of ‘going against the flow’. I said that my biggest fear was that we would be isolated and cut off by people as I watched groups of friends and families enjoying time together. We started to walk home across the field and for a few moments it was just me, David and Hannah until the moment was broken by a young boy charging towards us with a huge smile and his arms open wide followed by his Dad trying to keep up. The boy was called Joe and he had DS and it also happened that David knew the Dad from a while back, and there they were enjoying the park with a big group of friends. Our fears of being the only one with a child with DS and being isolated from people subsided instantly. We told him about our situation and felt so reassured, ‘the highs will be higher and the lows lower‘ he said.

We didn’t tell many people about the possibility of Beth having DS because I just wanted to enjoy the pregnancy, without having to think about how people might react and what their worries were.

As it goes I didn’t have to wait 9 months to find out if Beth had DS, as she arrived 2 months early! She needed surgery to fix a bowel problem (duodenal atresia) and it was then we found out about the hole in her heart.

It was hard once Beth was born, Hannah was 2 1/2 and Beth needed feeding with an NG tube because she was too week to suck. At 6 months she had open heart surgery at The Royal Brompton Hospital and it is this day that we celebrate the most, because it was the turning point for Beth. Whilst the thought of surgery was daunting, the surgeons saw it very much as routine and we were home in eight days. She was suddenly more alert, breastfeeding and everything just felt a bit more ‘normal’. Beth has no adverse effects from her bowel or heart surgery.

So, we fast forward to today and I feel so fortunate to have my three little ladies. It turns out Beth isn’t a ‘burden’ to Hannah but rather ‘the best sister ever’! The bond between them is very special and I have seen mutual adoration. Hannah is brilliant with Beth and helps her to do so much. Beth idolises Hannah and copies her every move. They are both enjoying their new sister and Beth is so intuitive and gentle. Beth is doing so well and when I look back at the weak and frail little baby to the strong bouncing Beth today I cannot believe how far we have all come.

As for daydreaming about camping……. well we camped in France this year and are hoping to camp next year in Cornwall. We had to wait longer for that camping holiday which made it all the more special; after all, we all know ‘good things come to those who wait’ and Beth has taught us all the power of patience. I still feel very blessed and our life is full. As for David, well he couldn’t love or be more proud of his three girls. We no longer have to try and be positive because we ARE positive about our life now and in the future.

Email scosterton@yahoo.com and phone 07894 354423