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   /  Aiden


Aiden was born on the living room wooden floor in an unplanned home birth! Fortunately a fabulous home birth midwife arrived in time to deliver him and saved his life. The midwives resuscitated Aiden for 40 minutes before he finally took his first breath. I remember the midwife saying it looked like “he might have Down Syndrome”, and I remember looking at my little purple baby still on the floor and saying “yes he does look like he has Down Syndrome and I don’t care just make my baby breathe”.


It turned out Aiden had 4 holes in his heart including a large VSD, all of which required surgery at Great Ormond Street when he was 11 weeks old. Initially we were told that nothing could be done to fix his heart because he had complications with pulmonary hypertension. A second opinion from Great Ormond Street gave us the life-line we were hoping for. In some ways I think the worry about all the life threatening heart issues took away some of the shock about him having Down Syndrome, it was like Down Syndrome got bumped right down the list. We were told to expect Aiden to be on permanent oxygen after his op, as it turned out, 5 days after open heart surgery he was home with us with no oxygen needed and a couple of weeks later no longer needed his feeding tube either. We had picked Aiden’s name before he was born and it means Little Fire. He really is a little fire, and we joked that he needed oxygen, heat and extra fuel (infitrini milk) to keep him going when he was little. He also needed jaundice treatment, had a tongue tie snipped, and various other bits and pieces. Medically speaking Aiden ticked all the boxes.

One of the reasons I wanted to write our story is in the hope that people who might receive a pre–natal diagnosis might read a story and know that even with lots of health problems these can more often than not be fixed, even really serious ones, and actually, out of all the children in the group, the majority of the children do not have health issues like Aiden had. I was told by a well meaning nurse that they had never seen a baby with Down Syndrome breast feed, I now know many babies with Down Syndrome that have breast fed, so I know this is a myth. I regret not persevering with breastfeeding because I gave in after listening to a misinformed stereotype based on one person’s experience. There are so many myths around what children with Down Syndrome can and can’t do, and I have many regrets about all the unnecessary worrying I did early on, I was wrong to listen solely to medical professionals and not seek out the support of others who had walked a similar path before me sooner. No body gives you a handbook when you have a baby, but when you have a baby with Down Syndrome you seem to get inundated with ‘helpful’ (ok really unhelpful) information, so my advise is take it with a pinch of salt unless the person has Down Syndrome themselves or is the parent of a child with Down Syndrome within the last few years, because information very quickly becomes out of date! We recently had the pleasure of meeting a young lady with Down Syndrome who travelled up independently from London to do some work experience, she told us that she strongly believes that the next generation of children will be even more able than she is because access to services and treatments are improving all the time and I see this already.

Initially I didn’t want to meet up with other people who had children with Down Syndrome, Aiden couldn’t catch a cold because of his heart and so I didn’t want to meet anyone, and friends were only allowed to meet Aiden by peering through the window of our house. We couldn’t have done it any other way in those early days but if I’m honest I would have loved for a parent to come and visit me in the hospital and tell me it was all going to be ok, I might not have believed them at the time but I might not have felt so alone, despite being surrounded by fantastic friends and family. You can’t take Down Syndrome away, and nor would I want to now, but you can treat lot’s of the ‘symptoms’ of Down Syndrome and the sooner you find out about the things that can be done from other parents the better. Googling Down Syndrome is to be avoided at all costs, it just brings up lots of negative medical information. Parents will sign post you to much more helpful and real life resources, there are some fantastic blogs and some great Facebook pages. There are also lots of services that you can access such as early Education Portage services aimed at giving your baby a head start on his/her peers; proper nutrition is also very important and being aware that dairy, gluten and soy intolerances are common in our children and many parents report great gains from month long elimination trials. Most importantly gathering this information but not forgetting you have a beautiful new baby and afternoon’s spent cuddling on the sofa and enjoying that delicious new born baby smell are vital!

So what’s our reality? Well, Aiden is 6 years old now, his heart is completely fixed, he’s just finished his reception year at his lovely mainstream school, he can write his own name and has an abundance of friends. We love our boy with all our hearts, and he makes us so proud. He recently did his first sports day and hearing all his friends cheering him on definitely bought on a bowt of hayfever J. Aiden loves superhero’s and he is currently nagging us to decorate his bedroom in a Captain America theme, he has an eclectic music taste, he loves Little Mix and Black Lace Agadoo! We feel so lucky to have Aiden in our lives and can’t imagine a world without him. Aiden is Aiden, Down Syndrome does not define who he is, it’s a part of him like his blonde hair is a part of him and I wouldn’t change either. Down Syndrome really isn’t scary, heart surgery is of course, but that all turned out right in the end.

PS No emotion is a wrong emotion, no question is a silly question, if you are a new mum, dad, friend or relative and you want to ask us something, just ask, email or phone, no one will be offended. Whilst everyone’s experiences are different, we’ve all been where you are before.