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   /  Matilda


Getting pregnant has been tricky for us, but we knew we had to try for a sibling for our first daughter Florrie. Our fourth cycle of IVF gave us our strongest embryo, it stuck and at our eight week scan we saw our little Prawn.

Our 12 week scan looked good, except our little Prawn was in a tricky position. The sonographer was unable to take any measurements, so I was advised to have the Quad test at my 16 week midwife visit.

The Quad test came back with a 1 in 66 chance of Down Syndrome. We had to know what we were playing with, but we were not prepared to risk losing our baby, so paid for the non-invasive genetic test.

The test scan showed everything about Prawn was as it should be. My bloods were taken, and I left with wonderful scan pictures and a recording of Prawns heartbeat, feeling positive.

It was a Thursday morning, when I received a call to tell me my baby had a 99% chance of having Down Syndrome. As the phone rang I knew what I was about hear. What I didn’t know was the gut-wrenching fear, sadness and anger it would leave in me.

I was 19 weeks pregnant. I had a much longed for baby growing inside of me that I suddenly felt so far detached from. The excitement suddenly fizzled out and I was left with a list of characteristics, a list of everything that could go wrong with my baby.

Then we cried, big gulping sobs as we tried to find a reality to what we were playing with, questioning everything and doubting what our baby would be. I can only describe that time as horrendous, yet through it all my baby started to move, tiny little tickles from the inside letting us know she was there, telling us not to give up on her.

And we didn’t, we couldn’t. But we were scared. Scared of the unknown, scared if she would be accepted by others, scared if she would be ok, scared of the impact she would have on Florrie, scared for our future.

We researched. The internet can be a bleak place, but can also be amazing. I found blogs, families sharing their stories and we started to see a clearer reality of what life could be. It was the best thing we did. It’s amazing how much support is out there. It also amazed me to find just how many people with Down syndrome live in my local community. It wasn’t going to be easy, but our Prawn would go to school, ride a bike, have friends, laugh, visit places, move out. Our preconceived misconceptions were being challenged and although we were petrified we felt calmer about the future.

Then came our 20 week scan. We were not going to find out the sex, but it turned out to be the best thing we did. Not only did it make Florrie so happy to know she was having a sister, but our baby suddenly changed from a diagnosis to a little girl. The consultant described her as “perfect”.

I started to look at it as being on the starting blocks of a long distance race except this time I had a heads up on some of the hurdles I might have to jump.

We told close family and decided that we wouldn’t announce the diagnosis but if anyone asked us about the pregnancy we would be open. We didn’t want the diagnosis to take over once she was born.

I can honestly say that I didn’t really enjoy my pregnancy, constantly churned up with worry. To protect myself I sometimes distanced myself from my bump.

The run up to my due date was hard. I didn’t want to give birth. I knew she was safe inside me, I could protect her. But also, I knew as soon as she was born I would have to deal with the realities of Down Syndrome and as much as I wanted my baby, that filled me with fear.

Then on the 5th March Matilda shot out on her terms and showed us that she had it sorted. And that was the moment everything changed.

Matilda isn’t Down Syndrome. Matilda is Matilda, our amazing baby girl who is just perfect.

I can’t get my pregnancy back but in a way I’m glad I had that time to question, be scared and cry because since the moment she was put in my arms we haven’t looked back. I have moments of guilt that we doubted her, but I wouldn’t change a thing. I love the way when you pick her up she’s that little bit floppier and melts into my shoulders. I love that she’s giving other children a run for their money developmentally. I love that she is fiercely independent, inquisitive and doesn’t stop playing and investigating. I love the way she makes people smile. I love the way a zest for life oozes from her every pore.

But mostly I love the bond she has with her sisters (she’s now also a big sister herself).

We treat Matilda the same as her sister, and she’s thriving. Don’t get me wrong, Matilda has her moments. At times her behaviour can be challenging (but she is 2!), she’s a live wire and likes to run off to see what she can find, fitting in appointments and therapies can be exhausting but her presence in our lives has changed us for the better. We are more accepting, calmer and much closer as a couple and family.

Once Down Syndrome was the worst thing that had ever happened to us. Today it is a very small part of what makes Matilda fabulous. Some days I don’t even think about it and I certainly don’t see it when I look at her. She really is the most delicious cherry on top of our family cake!