I first published this post in February 2015, but as next month is National Heart Month, I wanted to update it for the benefit of new readers and to encourage people to support Tiny Tickers’ Heart Week between 7th – 14th February 2016. Heart Week is a chance to join together to help babies born with serious heart conditions by raising vital funds and awareness. You can help out by donating or organising a fundraising event. All the details are on this link to Tiny Tickers’ website.
Here’s last year’s post, slightly updated:
This is the most challenging blog I’ve ever written.
A charity has been in touch to ask if I could write about Tiny Tickers Heart Week which is 7 to 14 February (Valentine’s Day, get it?). Tiny Tickers is a small national charity which aims to improve the detection, care and treatment of congenital heart defects in babies. They found me through Twitter, unaware of the fact that our youngest was born with a hole in his heart. So of course I want to support Heart Week and can write about this through a very personal lens.
When M (now six) was two days old we were discharged from hospital having had all the usual tests. We had been blessed with another healthy little boy and came home to start our new life as a family of four.
It was during a scheduled visit to the GP for a check-up at nine weeks that I was told M had a significant ‘murmur’ in his heart and we should have it checked out immediately. So ten days later M was hooked up to the heart monitor and having a scan at Great Ormond Street Hospital (GOSH).
We were told that he had a hole in his heart which was dangerously close to a valve and that there was a chance the hole would close as he grew, but that we should come in for scans every three months.
18 months later it was clear that, although M was fit and energetic, the hole in his heart wasn’t going anywhere and we were advised to go ahead with an operation.
I remember returning to work after signing the form explaining all the risks associated with this procedure. I was in a daze. M was only 20 months old and was booked in for open heart surgery.
M was oblivious. He wasn’t ill. He was familiar with GOSH by now having been for regular scans, so when he was shown to the waiting area, he was unconcerned and started playing with the toys.
I held my baby’s head and told him I loved him as the anesthetist put him to sleep.
A few hours later he was slowly coming to in the intensive care unit. He looked so fragile laying in this tiny plastic incubator with wires coming out of his heart, his stomach, nose and mouth. I was by his side when he woke up. He looked at me with a look on his face which seemed to say – ‘why?’ He mouthed the words ‘I love you Mummy’ but because of the tube down his through, no sound came out.
M and I both stayed in hospital for three nights, by which time he was up and about. It never ceases to amaze me how quickly he bounced back from having his chest opened and stapled back together.
GOSH perform these little miracles several times a day every day – they patched up his heart with a bit of cow skin. Here is a photograph of him playing in the GOSH playroom, less than 48 hours after his operation.
According to Tiny Tickers as many as one in every 125 babies in the UK has a congenital heart defect. Frighteningly, around 1000 newborn babies are sent home every year in the UK without anyone realising they have a potentially life-threatening condition, as we were. The charity provides specialist training to health professionals and sonographers so they are better able to identify a heart defect during a pregnancy scan. They also support parents with a diagnosis. Early detection greatly improves babies’ chance of survival.
M is absolutely fine now. He’s a happy, slightly bonkers, healthy six year old (he’s now seven), who wants to be a sandwich when he grows up.