Family of three with Down's syndrome

Melissa talks about the moment after birth when she realised her baby had Down's syndrome. Her hopes and fears and why - if she could go back in time - she wouldn’t have wasted the tears she shed then…

Wednesday 14 May 2014. I dropped my 6 year-old son, Alexander, at school and walked home with my daughter Elizabeth, aged 3. I was 38 weeks pregnant and starting to feel niggles that I suspected were the early signs of labour. I called my husband Alan at work to let him know that I might need him home.

As my labour progressed and my waters went (at the park, yay), we headed to the hospital and arranged for Alan’s parents to meet us there. I was triaged and admitted onto the labour ward quickly. It wasn’t long before our baby arrived in the world.

Something wasn’t right

We’d not found out the sex of baby so that was our first surprise, a second little girl had joined our family. We didn’t have a name for her to begin with. We had a boy’s name ready to go but hadn’t agreed on a name for a girl. 

The moment I laid eyes on her I knew something wasn’t quite right. She looked different to our other two kids. I asked Alan if he thought she “looked funny”. He pressed me to explain what I meant but I couldn’t bring myself to say the words. He said to me “You think she’s got Down's syndrome, don’t you?” I asked if he did too. He replied, “Well I knew what you were talking about”.

We raised our concerns with the midwife. She said that she couldn’t see it and perhaps baby was ‘just a bit squashed from being born’. But she agreed to contact the on-call paediatrician. In the meantime, Alan had googled the signs of Down's syndrome: flattened nasal bridge, sandal toe gap, epicanthal folds… We ticked off a few. 

It was a while before the paediatrician made it to us but by that point, we’d decided that she did have Down's syndrome. The paediatrician said it looked likely that she did too but it would need to be confirmed with a blood test. 

Tears and shame

I spent much of the next few hours crying. We phoned family to let them know baby had arrived and break the ‘bad news’. I didn’t want to tell other people that she was here. I didn’t want to tell them that she had Down's syndrome. I don’t know why but I felt ashamed of her, of the Down's syndrome. I was concerned about what other people might think of our baby girl and scared that they wouldn’t see beyond her disability. 

I took dozens of photos and deleted them because all I could see was the Down's syndrome and I hated it. I didn’t want other people to see that too. At the time of her birth, I was doing a photo challenge called ‘100 Happy Days’. I’d planned that for the day of her birth that my ‘happy photo’ would be of our baby. I didn’t post a photo of her that day.

As the hours passed, I decided I would call one of my good friends. I could barely get my words out through the sobs. When I finally blurted out the words “she’s got Down's syndrome”, her reply was just the perspective I needed. “Oh my god woman, is that it? I thought she was dead!” She went on to say something about being in Holland but that didn’t register. It was something I came to understand later on when I was given the story ‘Welcome to Holland’ by Emily Perl Kingsley.

Despite the new perspective I’d been given, I slept very little that night with the worry over what the future held for our little girl and us. I was in a side ward by myself when all I wanted was company and someone to talk to. Whenever the midwives checked in on me, I wanted them to stay and talk, to listen to me and allay my fears. But they didn’t. They didn’t have time. And the pity they felt was written all over their faces. I told one midwife that did stay a while that I thought the baby had ‘ruined my perfect family’ and promptly burst into tears because I obviously didn’t mean it and was already fiercely in love with this baby girl. 

Welcoming Francesca to our family and friends

The following day we decided on a name and ‘baby’ became Francesca. We introduced Francesca to her big brother and sister. We told them she had Down's syndrome but, in that moment, it didn’t matter to them. All they knew was they had a new baby sister and she was perfect!

Bloods were taken and tests done, the result confirmed on the Friday as we sat having lunch. I cried again as it meant the last tiny slither of hope that she didn’t have Down's syndrome was gone.

In the early days, I was careful who I told about Francesca having Down's syndrome. I didn’t want people feeling pity towards her or us. The friends who were among the first to know were great and said nothing more than ‘congratulations’. The first of our friends to actually meet Francesca, and the first person we’d had to tell face to face of her Down's syndrome, just looked at her and said ‘she’s beautiful, congratulations’. These small gestures, people marking her arrival just as they had done our other kids meant so much, way more than those friends would ever have realised.

My amazing daughter 

Francesca is four now and when I look at her, I cannot believe the sorrow and shame I felt in those early days. I still can’t talk about those first few days without getting upset. I feel ashamed - not of her - but of how I felt towards her diagnosis.

Francesca is amazing. I wouldn’t change her for the world. She’s brought such joy and laughter into our lives and given us fantastic opportunities that we never would have had without her! She’s so determined and feisty. She knows exactly what she wants and how to get it (usually with the help of the big brother and sister who she has wrapped around her little finger).

In the last year alone, she’s won a national competition to become the face of a luxury childrenswear brand, starred in the viral ‘carpool karaoke’ video, 50 mums | 50 kids | 1 Extra Chromosome. This led to us being invited to attend a UK film premiere. She’s also been signed to a fabulous modelling agency and modelled for many big name brands. 

She’s started full-time school and settled in brilliantly. She is keen to learn, she’s counting and reading and making loads of new friends. She goes to dance classes and has recently taken her second set of exams and now rehearsals for her first show are in full swing.

The reality of life with a child with Down's syndrome is far from what I’d feared in those early days. There are challenges and more appointments than I’ve ever had to deal with previously but the positives massively outweigh that. If me now could speak to me then I definitely wouldn’t have wasted any tears.

Further information

Read more information for new parents on the Down's Syndrome Association website.

Call the Down's Syndrome Association helpline on 0333 121 2300 for advice or the parent-led support organisation Positive About Down Syndrome.

For more information and advice, read our article What to expect if your baby has Down's syndrome. You can also find out about children and young people's services and assessing your care needs.

Read about special educational needs and children with a learning disability. You can also find out more about education on the Down's Syndrome Association website and on Down syndrome education international.

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