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.

  /  Growing up   /  Alex


Alex is our much-loved second boy of three. Three boys are trouble whichever way you look at it, but they all bring us happiness in their different ways.

When I was pregnant with Alex I went for the routine triple test, given as routine and without any counseling, and because of a series of admin hurdles we only got the result when I was 16 weeks pregnant and baby was making his presence well and truly felt being very active. The result was 1 in 100 for Down Syndrome. We discussed the implications of an invasive test and decided that our baby was much wanted and we didn’t want to risk a miscarriage. We would be fine if our baby had Down Syndrome.


Roll on a few months and as we drove to the hospital with me in labour we asked each other if we thought our baby would be ‘the one’ in a hundred. He was.

An emergency caesarian section was required, it turns out I’m not very good at giving birth. In the recovery room my husband asked the midwife if she thought baby had Down Syndrome (we thought it was obvious) and she mumbled and said she would ask the pediatrician to talk to us. On the ward, Alex was rushed off for x-rays to look at his heart – he had a leaky heart. And then a wait for bowel movement in case he had problems down there too – guts were fine. I didn’t care two hoots as I was high on post-operative drugs, but husband had to cope with the obligatory phone calls to relatives that included ‘the bad news’. He had a bad day and cried a lot. We had to wait days for an actual diagnosis, but not surprisingly he did have an extra chromosome.

Alex spent some time in Special Care Baby Unit (SCBU) as he couldn’t control his own temperature at first and it took a little while to establish breast feeding – I expressed milk and he was tube fed for a few days. It seemed like an eternity, but the nurses were lovely and I realized there was a whole world of disability out there that I knew nothing about.

When I became pregnant I had had an expectation that I would have a ‘normal’ pregnancy, a ‘normal’ birth and a ‘normal’ child just like me. When life didn’t turn out like that it was a shock, I felt cheated and disillusioned. But I told myself we would be fine and we would have to get on it. Finding the piece of writing ‘Trip to Amsterdam” really helped; our journey might have changed direction, but we were still on a journey to having a family and we would enjoy it.

Whilst in SCBU a health visitor came to see me and told me of another baby that had been born a month earlier with Down Syndrome and she put me in touch with the mother.   We are still friends and see each other most weeks. Finding other families in the same boat has been supportive and empowering.

We eventually left hospital when Alex was able to take enough oxygen on board to survive, this was a difficult task thanks to that hole in his heart. And at ten weeks old he was called for open heart surgery. It is miraculous that a surgeon is able to operate on such a tiny heart and make such a profound difference. The ten days in hospital dragged with small improvements and disheartening setbacks, but finally we were home and we suddenly had a thriving baby rather than a surviving one. On one of our regular post-op check-ups, one of the nurses weighing Alex said ‘just what he needed – a bit of heart surgery’. And it was, he gained weight, started growing and hasn’t stopped yet.

Life is different living with a child with Down Syndrome, but not in a negative way. Raising a child is hard work, any child. A child with Down Syndrome needs you to have an extra dose of patience and tenacity, but these are not bad talents to hone. Your whole family will benefit; your other children, your friends and extended family will all become more understanding, empathetic, good people. Not a bad legacy.

A child with Down Syndrome will bring a deeper level of appreciation and joy to your life. You will see the best in people and places, you will take your time to savour new experiences and see them in an entirely different light, your eyes will open, as if for the first time, to the joy in everyday experiences.

Alex is now at Secondary School with his mates and his brothers, I have just had a congratulatory email from school that he has earned 6 achievement points in his first week in Year 8, he is almost fully included in the standard curriculum. He rides a trike and a pony, he loves camping and flying, he is a joy to take travelling and opens more doors and generates more smiles than we would see without him. Alex is not disabled, he is different.

Life is not as I imagined it would be, but it was never likely to be. We love all our children and they all have different skills and weaknesses, life is not the same after you have kids, it is better and more fulfilling, with or without Down Syndrome.