Our boy with Down Syndrome

Obviously those that know us, know that our youngest boy (FB) has Down Syndrome. He will be four in February and is a complete hoot. Really. We all adore him.

As with all children, there are various tales to tell. I’m not actually too sure what people would find interesting or helpful (in some cases) to hear about our boy but I do know that some people really do want to hear about families with a child with Down Syndrome, so I thought I’d write a little something.

We were given a risk of 1 in 5 when I was 11 weeks pregnant, so then I knew. I requested a foetal cardiac scan at 16 weeks and that showed an AVSD (heart abnormality that would require surgery). I used to work in cardiac surgery running the heart lung machine, so I wasn’t too phased by this though my poor husband was. Then at every scan after that, (which I had to attend alone as my husband was looking after our then 3 and 2 year olds), I remember shaking with fear that they would tell me that our baby was incompatible with life.

It was the worst feeling in the world.

At 40+ something weeks, my waters broke. I had to be induced as the contractions didn’t start. 1 hour from start to finish and our gorgeous (screaming) boy arrived. It was confirmed that he was likely to have Down Syndrome (though I thought it was very obvious I have to say). We were taken to Great Ormond St ‘for checks’ as they thought something else might be up cardiac wise, which it wasn’t thankfully. It did mean however, that I had to sit on a hard chair all day every day from giving birth until we were released 3 days later!

Another tricky bit was the heart operation to repair his AVSD when he was 7 months old. Well not that so much, as that his time in intensive care post-op correlated exactly with our daughters first day at school.

Then that first winter – he was hospitalised twice with bronchiolitis and croup. The first time was a week, the second time was just for 3 days BUT my mum who had metastatic bone cancer suddenly deteriorated. What happened next was incredible…

After almost three days, ‘the hospital’ finally heard the croupy cough that I’d been reporting but hadn’t managed to catch on video and the significantly worsening stridor (whistling sound when you breathe). They gave him a shot of steroids, which resulted in a miraculous turnaround. They agreed to discharge him with the NG feeding tube he’d had to have while he was ill. That meant that I could leave him safely at home with my husband while I drove for one and a half hours to try and see Mum before she died. Despite a huge accident on the motorway I made it. An amazing bonus that I just wasn’t expecting.

We discovered that FB had various food intolerances (like me and my sister) and once we’d cracked that, he’s never been so sick since AND his tonsils shrank significantly! He gets mild colds and otherwise gets everything at the same level as everyone else, or less.

Yes he has developmental delays but he’s otherwise fit and healthy and finds everything VERY interesting indeed. He loves going on the bus and will identify a victim and then grin at them until they are totally under his spell. He’s actually doing really really well and although each milestone comes more slowly, they still come. He’s a fully functioning member of our family and makes us all laugh every day.

I wonder what he will make of Elfie’s Christmas Letters this year!