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.

  /  Post natal   /  River


My story is very unique, in the sense that River wasn’t diagnosed with Down syndrome until he was 6 months old. I often feel like by not getting a birth diagnosis, I kind of side stepped those initial first months of fear and sadness. It just never really came, not in an intense way.


I had a wonderful pregnancy with River, not even one single symptom.  I had all my scans overseas as I was living in Tanzania at the time with my husband and 3 year old son Skyler, nothing was picked up. We came to the UK when I was 7 months pregnant, I had meetings with my doctor and we arranged a home birth. It was honestly a really wonderful time and I have nothing but fond memories. Even the labor was pretty straight forward, other than the fact that he came so fast that the midwife came very close to not even getting there in time. It was all over in an hour and he was born on the living room floor, we never even made it to the beautiful delivery room I had spent weeks setting up! After River was born we were in bed within two hours, no mention or any suspicions of Down syndrome whatsoever. He was strong, healthy and latched immediately onto the breast.

The next day when I was looking at my newborn the doubts started coming and I just had a feeling something wasn’t quite right. I suspected straight away, in fact I think I knew straight away that he had Down syndrome. I never mentioned it to anyone at all, and at the first two midwife visits after his birth, nothing was mentioned. I continued to hide my fears from everyone, even deleting photos that I thought he looked like he had DS in. But I knew. On the third home visit from the midwife she made a comment that he looked ‘a bit funny’ and in that instant it was confirmed for me. I wasn’t imagining it. And surprisingly I wasn’t offended at the time by the words she used, but of course now I know it was a terrible choice of words. Anyway, she sent us to the hospital to have him checked over and I was completely terrified, although still I’d mentioned it to nobody.

Looking back now the hospital visit was a bit of a joke and handled very badly, although believe it or not I am actually thankful for it, in a strange way. River was basically looked at by a doctor, had his joints wiggled, a torch shone in his eyes and that was it. So, were sent on our way and told everything was fine. No mention of Down syndrome at all, and of course I clung to that, even though deep down I still knew.

After the hospital appointments we had health visitor visits, midwife visits, hearing tests (which he failed 3 times), appointments with breastfeeding specialists as we faced many struggles in that area, immunizations and his 12 week doctor’s check. Not once was it suspected by anyone that he had Down syndrome, and to be honest now when I look back I don’t really know why. He didn’t have all the associated characteristics, but he certainly had some, such a palm crease, low set ears, a herniated belly button and almond set eyes. He wasn’t ‘floppy’ due to low muscle tone and I believe maybe this threw medical staff off, but it shouldn’t have been missed. River was finally diagnosed in Nairobi at six months old, no long after we returned to Africa.

It’s hard to explain, but I am actually really thankful that we didn’t find out that River had Down syndrome until he was older.  We had six months to bond with him, watch him form a relationship with his big brother and just be us, without Down syndrome being a factor. I of course suspected all along, so by the time we were told he did have that extra chromosome I had already accepted it. I already knew not to be afraid and that he was an amazing little boy who was going to be just fine. We were all going to be just fine. And I’ve since heard so many negative stories about how the news was broken to families that I am so thankful that I never had to face that. So much work needs to be done to make sure all medical staff are educated about Down syndrome, in an emotional way as well as medical facts. That was not the case when I gave birth, so I am grateful to not have known.

Now let me tell you about River, who is now two years old. He is feisty, funny, mischievous, intelligent, crafty, loving and extremely adventurous. He took his first steps a few weeks ago, but has been crawling and climbing everything in sight since he turned one. He eats everything, feeds himself, drinks from a cup, has approximately 20 words and imitates everything. He loves vehicles, loves cooking, loves books, loves dancing, loves socializing and loves riding his motorbike. He is a very ‘normal’ two year old, tantrums included. He is rarely sick, has no medical conditions and a physiotherapist has just told us he is developing perfectly in every area. He is a healthy little boy.

It may seem like I’m sugar coating it, but I’m really not, we are genuinely very happy with our lives and our son. Down syndrome seems terrifying when you don’t know otherwise, but it really isn’t so scary at all when you’re living it. Is life perfect? Not at all, but is it ever? We know we will face obstacles in the future and are prepared to face the hard times head on. In the same way I will with my eldest son if I need to, because we never really know how life will pan out for any of us.

All we know is that River has Down syndrome and has enriched our lives in so many ways. I wouldn’t change him for the world.

https://iamriver.net/ and Facebook https://www.facebook.com/IamRiverDownSyndromeAwareness/