9 years ago today my daughter was born.
Apparently 40% of children born with Down’s Syndrome have heart defects ranging from a slight murmur that will never amount to anything, through to abnormalities that mean the child won’t last a few hours beyond birth.
Meg’s initial scans didn’t show any problems with her heart, although when she was about 3 months old the doctor thought she could hear a slight murmur. An appointment with a specialist was arranged and it was established that Meg had a small hole in her heart.
There was a time when children with this kind of heart condition would have been operated on when they were 3 or 4 years old, the idea being that it was important that they be strong enough for it. However over time it was realised that forcing the heart and blood vessels to work under these conditions for that amount of time caused irreversible damage, therefore it was concluded that operations such as this should be done sooner rather than later.
Any operation carries a risk and what parent can easily put their baby through an ordeal that requires her chest cavity being opened up and her heart stopped, sewn up and restarted? To say we baulked at the idea would be an understatement. But what was our alternative?
The first few months of Meg’s life were dominated by trying to get her to feed enough to keep her strength up. It would typically take up to an hour and a half for each feed, when she would need to be fed every three hours. Even then she would often throw up every second or third bottle, causing us to weep with frustration as every ounce of milk counted.
What would happen if she wasn’t operated on?
In essence, her growth would be a struggle, she would get steadily weaker and she wouldn’t be expected to live beyond 7 or 8 years old.
We had no choice, but it was an awful decision to have to go through nonetheless.
So at 5 months old Meg had open-heart surgery and I lost any vestiges of belief in a universe that made sense (see Losing my Religion).
It turned out that not only did she have a small hole in her heart, she had a large one too, and several tiny ones. But she survived the operation and her condition improved dramatically. She has now reached her 9th birthday and this has become a significant age to me - had we lived in a time where the medical technology was less advanced she would not be with us now. I don’t thank the universe or any gods - we were just lucky where many are not – but I am so glad she is still with us.
My heart is full of love, pride and awe for my little girl and today I will hold her a little closer, squeeze her a little tighter and try and keep the tears from my eyes.
Meg's birthday card
"You've had some great presents today haven't you?" we said to Meg during her birthday tea.
"Yes," she replied, "AND it's my birthday as well!"
I guess it doesn't get much better than that then.