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   /  Ted


Very soon after having my first daughter I fell pregnant with a little boy and, again, we refused all screening but had all the routine growth scans which showed a ‘healthy’ baby.

At 35wks I felt a familiar ache and I tried to convince myself that contractions hadn’t started so early, but after a long night of slow pain I rang the hospital who, as it was quiet on the ward, told me to pop in and they’d take a quick look at me.

After a quick examination, it transpired that I was 8cm dilated and our son would be putting in an early appearance. Extra staff filled up the room to make the necessary arrangements for neonatal equipment and an epidural was arranged to slow labour down whilst the baby received antibiotics to prevent infection. Even though slightly tense, the atmosphere was fairly light and the radio was playing happily in the background. We were excited to meet our baby, a bit earlier than expected but we were optimistic that all would be well.

A few hours later and following a very quick delivery Ted was born; 35 weeks+2 days, 6lbs 10oz and absolutely perfect. He was put straight on my chest and I loved him with an instant rush of emotion but something about his appearance troubled me. We quickly realised that he was blue and floppy and quiet, so the nurses stepped in to help him and I couldn’t shake from my mind the thought that he looked ‘different’ to how I was expecting.

As he was being assessed small sideward glances and hushed voices were exchanged around the room by the staff. My husband and I tried to absorb the shift in atmosphere from the complete euphoria of the delivery of our baby to an emerging undercurrent which brought a much more subdued and serious feeling. My fuzzy brain was trying to process through the wooziness what was happening with my baby. I could feel there was something else, something the midwives weren’t expecting.

As they checked him over, the seemingly benign questions began ‘is this your first baby?’ ‘did you have a healthy pregnancy?’ to which I continued to respond on autopilot until the nurse brought him back to me and I held him, studying his little face. Then someone said ‘Did you have your Down’s syndrome screening?’
Bam. That was it.

It was as plain as the perfect nose on his little blue face and that funny feeling suddenly fully registered.

Our baby had Down syndrome.

The next minutes are lost as in one small question our life was turned upside down and inside out. Shock set in. I remember I wanted to pick him up and run away with him. This couldn’t be happening.

Somehow, we got through the next few hours in a tearful silence that neither of us could understand, our frightened heads filling up with every dreadful stereotype that we’d ever been exposed to.

What did it mean? What would his life be like? How could this have happened? Question after question rolling around our brains.

When I was finally able to go to see him on the Neonatal ward that night, a nurse came and spoke to me. She told me that her daughter also had DS but was grown up now and she lent me her family photo album which was filled with everyday photos of holidays and bike rides, Christmases and birthdays.
An extraordinary, yet ordinary life.
As I turned the pages a flicker of light began to shine.
She gently reminded me that I’d had a baby not a diagnosis and she told me that although I might not believe it then, I was about to go on the best adventure of my life. We talked for a long time that night and her calm words were pivotal for me, she helped me to snap out of my spiral of fear and I went back to seeing my baby as just a little boy with a wonderfully ordinary life ahead of him.
Just like we’d planned.

That little boy is almost 11 now and is the apple of his grandparent’s eyes, has a group of school friends, plays football on a Saturday and brings joy wherever he goes.

But there’s no mistaking that he’s his own man; a unique individual. Someone who did not get the memo about being ‘happy’ and always ‘loving’. He has his own ideas about how he lives his life, and is light years away from the bleak imaginings of my frightened heart in those early hours and days.

He lives his life with the dial turned up to 10 and is the freest person I know, living in the right now – yesterday is gone and tomorrow is unwritten.

Our family actually is on the most amazing journey and we are 100% the better for having Ted in our lives, his sisters love him fiercely and have developed a level of tolerance and kindness that cannot be taught.

If I could go back and talk to the ‘me’ in the delivery suite I’d tell ‘me’ that although things seem completely overwhelming in those early days, the future is far brighter than you can ever imagine – full of laughter and fun, the highest highs and some difficult bumps in the road that you’ll learn to navigate through with the help of a community of wonderful friends that you would not have met otherwise.

The sun still comes up in the morning, the earth still turns and you’ll go on your own extraordinary ordinary adventure.

Congratulations, welcome to the best kept secret.

Phone 07596 233009