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   /  Jaxon


My name is Mark. I met my wife in 2001 and we were married by 2003. Lorraine is 9 years older than me and already had a teenage son.  Feeling time wasn’t on our side we added a daughter, a son and another daughter to our family.  Our family was complete but in 2013 we found out we were expecting again.

It was not to be. Lorraine suffered a miscarriage at 10 weeks. It was probably the hardest most heart-breaking thing either of us had ever been through.

We decided to try again. Lorraine was now 44 so time was really against us. It didn’t happen. When she reached 45 we agreed to stop trying.

3 months later we had a positive pregnancy test.

We were equally overjoyed and terrified…what if we lost this baby too?

At 12 weeks we went for our first scan and our first negative encounter from the NHS. The sonographer doing the scan was quite outspoken on her views on testing. She expected women to have a termination if anything was detected.

As it turned out all was good on the scan. There was the heartbeat. Dates were confirmed. Our healthy baby was due on 11th August 2014.

A week later, I flew out to Australia to accompany my Nan (90) and my auntie Helen on their journey home. While I was there I received a tearful call from Lorraine saying a midwife had called to say there was a high ‘risk’, 1:5, that our baby had Down syndrome. Even worse, there was a 1:5 risk the baby would not be born alive as the results could mean the placenta would fail.

I grew up with my auntie Helen, now 48. She has DS. We got into all sorts of scrapes growing up. To my Nan’s horror I taught Helen to climb fences and gates. We played knock down ginger where we knocked on people’s doors and ran away…except Helen wouldn’t run…she would stand there smiling at whoever opened the door, so we would both be in trouble when we got home.

Second negative from NHS as they expected Lorraine to have an amniocentesis to confirm DS and talk through next steps.

We refused all invasive testing.

20 week scan came and went. All good, no markers for DS, baby growing well. We insisted on regular growth scans as we were so scared the placenta would fail and we would lose the baby.

Further scans every 4 weeks were reassuring. All looked good, baby lively and healthy.

At 36 weeks it wasn’t so good. Growth had slowed. Consultant was unconcerned. We insisted on Doppler scan which showed problem with placenta. Still the consultant was unconcerned and wanted to send us home. I got cross and told him we were not prepared to lose this baby and I would hold him fully responsible. He decided to admit us. A few dips in baby’s heartbeat meant Lorraine was induced the next day.

After a very quick labour we had a baby boy. He was quickly examined and handed over. He latched on straight away and had his first feed.

Lorraine went off for her shower and I got my first real hold of him. I realised straight away he had DS. How had everyone missed it? Was I more aware because of Helen?

Lorraine came back and I handed him back to her. “Do his eyes look a bit strange to you?” I asked her. She realised what I meant straight away. “Do you think he’s got Down’s syndrome?” She asked. I nodded, she didn’t agree but we called for a paediatrician. He confirmed my fears. Simian line on each hand, low set ears, slight sandal toe, fleshy neck and those eyes.

Within minutes it seemed every midwife in the hospital were coming in to have a look. All exclaiming how beautiful he was…I could feel myself getting angrier and angrier….he isn’t beautiful he’s got Down’s syndrome! Stop saying he’s beautiful.

I went to get my other children. They all fell instantly in love with him. They were unphased by his diagnosis.

My parents were on their way. I went to the car park to meet them. As they came towards me with big smiles I felt my eyes fill. Mum noticed straight away “what’s wrong?” She asked her eyes filling up too…I could hardly get the words out “he’s got Down’s syndrome” I cried. Dad blasted “oh for f***s sake”

His response shook me out of my shock, anger and sadness….this was my son! Yes he had DS….I almost expected, and thought I had accepted it, from that first phone call.

I went back up with a completely different attitude.

The next few days I had to hold him while they took blood and run tests.

On day 4 we were called into a room. 3 grim faced doctors sat us down with a box of tissues. “Well it’s as we feared” they said “I’m afraid it is DS”.

Such negativity towards our gorgeous son. We started cracking jokes, our shared sense of humour mocking their doom filled diagnosis. ”Do you understand what we are saying? He does have DS!” They seemed disappointed and confused that we weren’t in bits.

Jaxon is now 4. There is no tragedy about him. He is healthy and amazing.

I love him so much and he loves me. He runs to me with total joy. His smile and joy at life is infectious. We all adore him. He has the best sense of humour and our lives are full of laughter.

I am proud to be his Dad.