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.

  /  Into Childhood   /  Kitty


Kitty is the youngest of our four children, who were 8, 6 & 4 when she came along.  Hers had been a fairly stressful pregnancy for various reasons, but we avoided any screening tests and we hadn’t really considered the possibility that our 4th child would be any different to the older three.  


A couple of hours after the birth, while we were still in recovery, a consultant checked Kitty over yet again and then wandered over to us. He began to list a series of ‘markers’ that they had spotted. I think he got as far as single palmar crease, high palate and low set ears when I realised what he was getting at (my husband was still staring blankly at this point!) and I blurted out ‘you think she has down syndrome?’. The idea that our beautiful new daughter was primarily defined by a list of standard markers and potential medical complications was one that dominated most of the contact we had with doctors over the next few days, while we waited for the diagnosis to be confirmed. I’ll admit, I was shell shocked, we both were, but my husband had the possibly welcome distraction of trying to manage the chaos at home with the other 3 kids to look after!

In hindsight, a big part of the problem for me was feeling like I didn’t know how to look after my baby properly – in theory I was an ‘old hand’ at the baby stuff, but this felt different and that really threw me. Breastfeeding was very important to me and yet Kitty’s first few feeds were formula, and I was struggling to establish a supply through expressing.   A midwife recognised how important this was to me and helped me to express far more effectively – by day 3 Kitty was having exclusive EBM (and I was filling up the fridge on SCBU!). With a lot of perseverance – by the time she was 6 weeks we had ditched the bottles altogether. For me, that was what felt ‘normal’ and really helped me to see that our little girl was not so different to her older siblings after all – her needs were just like those of any other baby, and she certainly wasn’t (and isn’t) defined by her diagnosis.

For the first year we did have lots of appointments for her – hospital check-ups, physiotherapy, speech and language, but still had plenty of time for fun stuff like baby groups, sing & sign and swimming. When I returned to work Kitty started at a mainstream nursery and now she is just starting at the same school as her siblings, and is very excited about it. Just like lots of 4 year olds, Kitty loves books, playing with dolls, dancing and Peppa Pig. 

We’ve had to wait a little longer for some of the milestones like crawling, walking and talking, but we’ve learnt to be a bit more patient and have confidence that she’ll get there in her own time. One thing we were really concerned about at first was the affect that Kitty’s condition would have on her brothers and sister, but from the moment we brought her home she just seemed to fit in. Kitty’s siblings are her biggest cheerleaders – they think she is amazing and it’s so lovely to watch them all playing and laughing together.

In all honesty, despite all the fears we had when Kitty was diagnosed with Down syndrome, it really isn’t a big deal at all now. I often wish I’d known then what I’ve learnt since – that a diagnosis of Down syndrome really isn’t anything to be scared about.  She is just Kitty, and to us she’s perfect!

Email ursula.adams123@gmail.com and phone 07734 219677

Crispin 07828 282170 and crispin.adams24@gmail.com