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   /  Evie


My husband Chris and I had been married for a couple of years and felt we were ready to start a family. It took a little time to fall pregnant but when we did it was like we were walking on air. We were finally going to be parents and my mind started racing thinking about what our future child would look like etc. We had always decided we wouldn’t find out the sex, we felt there weren’t many amazing surprises left anymore so this was definitely going to be our biggest yet.


At around 10 weeks we paid for a private scan and took home a beautiful video of our baby bouncing away inside me. The excitement was just immense.

At our 12 weeks scan we were asked if we wanted to have the standard ‘Nuchal Scan’. We both agreed, but I don’t think either of us ever thought of it raising any alarm bells. We had seen our baby and it looked just perfect! We were told we would get a letter if the ‘risk’ (a word I really don’t like using) wasn’t high or we would receive a call from the nurses if it flagged up anything. We drove home that day, staring at this little person in the scan pictures and excited about what our future holds.

A few days later the dreaded call came.  A midwife called to tell me that we had a 1 in 7 chance of our precious baby having Down Syndrome. To this day I still remember receiving the call at work. I think it will be a day I will never forget. I just couldn’t stop crying and eventually gathered myself together enough to call Chris. We agreed to go into the hospital to talk to the midwife about what this meant for us and our future child.

When we met the midwife, she was very sympathetic but she wasn’t reassuring. She listed the types of complications that can be associated with Down Syndrome. We left the room with a handful of leaflets and headed home in complete despair. That afternoon we decided to have the Harmony blood test as this would give us the confirmation as to what faced our little baby.

I don’t think I stopped crying for about 2 weeks…… We discussed our options and what it would mean for us to have a child with Down Syndrome. Neither of us had ever had any real contact with anyone with the condition. We waited for the Harmony results. It was the longest 2 weeks of my life. I was all consumed with worry and upset.

This time, my husband decided he was probably better at receiving the call for the Harmony results. We were in Yorkshire for a family member’s birthday. Ironically that day I had been sat in a café with my Mom and I felt our baby’s movement for the first time. It was only a little flutter but it was enough to remind me of my baby’s presence. I never forget the moment his phone rang, we were ordering our coffee, I knew by his face it confirmed our worse fears. He tried to hide it but I knew.

For the next few hours my head was flooded with a whole host of thoughts…… Would we lose friends? Would our child have any friends? Would they have a happy life? Would we be able to support them? How will our future look, it seems like our ‘family’ wouldn’t be the same. How would my family accept a child with Down Syndrome? I look back now and whilst I think all of my worries were normal, I wish I had not spent any time worrying about these things. All of the associations we spoke to really didn’t give us any reassurance. We then agreed that no better person to speak with would be either an individual with DS or a family/parent with a child with DS. I found a local group near us who supported families with DS and reached out to the lady who ran the group.  We spoke at length about her son and how life is for him and their family.  It was a frank and honest conversation but one that I will always remember. That call changed my life forever! I knew that everything would be ok.

Evelyn was born at 33 +4 and required surgery at a few days old as she had Duodenal Atresia. She eventually came home after 5 weeks in hospital. That time we took her home was the best day of our lives. We could finally be a family.

Three years later and how is life for our family?  Evie is an amazing little girl, confident, assured and full of life. Is she the little girl we wanted? Absolutely!  Is she happy and healthy? Absolutely! She might have been delayed in walking and talking but she is one firecracker and can definitely hold her own! Would we change her? Never! Do we have friends? Yes all our friends and many more new friends! Is our life any less for her being in it? Absolutely not!

Do we think about and plan about the future? Yes we do. We do worry. However, a very wise woman once said to me, never to look any further than 5 years ahead. We believe our little girl will have a very bright future. Especially if the voice of the amazing Down Syndrome community gets louder, which I have no doubt it will.