Half hearted
My baby’s broken heart is full of love!
We had streamers, balloons, cakes, and a packed room, full of excited friends and family all waiting for us.
‘How are we going to tell them?’ I said to my then partner George, feeling numb.
Pregnant with my first baby, we’d just been to my 20-week scan.
And we’d planned a party to unveil the sex.
But doctors found a problem with our baby’s heart and I’d need more tests.
Still, we carried on with the party and cut a blue cake to announce we were having a boy.
At Southampton General Hospital the very next day, tests showed our little boy had hypoplastic left heart syndrome.
The left lower pumping chamber of his heart hadn’t developed properly and was much smaller than usual.
‘His heart isn’t able to pump blood around the body properly,’ a doctor said.
Doctors weren’t he’d survive, so we were offered a termination. ‘No way,’ I said. And we decided to name him Sebastian.
On 23 December 2015, Sebastian arrived kicking and screaming!
At 7lb 12oz he was just perfect.
He had a heart line put in for medication to stop him going into cardiac arrest, for two weeks, he remained stable.
At 2 weeks, he had open-heart surgery, to widen his aorta and to insert a stent.
At 4 months old, during a second op to repair his heart, there were complications.
‘You need to prepare for the worst,’ a doctor warned me. I was totally devastated.
After surgery, Seb needed several blood transfusions but, thankfully, he started to stabilise and, after a week, he was moved to a ward.
And then he was allowed home. Amazing!
But it was bittersweet, as the same day, another family we’d got to know lost their little boy.
He’d been just two weeks older than Sebastian.
It brought home how lucky we were to still have our boy.
Away from the ward, George and I got used to being parents.
But one weekend Seb slept for hours, which wasn’t like him. So I took him to the hospital. After seeing a cardiologist, we were told Seb’s heart was failing. ‘This can’t happen!’ I cried. His aorta had twisted and he needed a procedure to fix it.
It didn’t help much, though,
and neither did a second procedure. ‘He needs more surgery,’ a doctor said. By now, it was nearly Seb’s first birthday. ‘Let him celebrate it before the op,’ I begged. We took Seb home and made a fuss of him with balloons, presents and singing songs. By now, George and I had grown apart, split up. But we made Seb our priority.
This January, Seb had another operation to try to fix his heart.
Afterwards, he fought hard and got stronger.
A week and a half on, he was allowed home.
He wasn’t out of the woods yet, though.
Shortly afterwards, he was back in hospital after contracting a cold.
With his immune system so weak, it was deadly. But he was a born fighter. Before we knew it, he was back home again. Seb will be 2 this year. His future is uncertain but we know he’ll need more heart surgery.
I have to pinch myself to believe how far he’s come.
He’s such a happy boy, and his precious smile can melt even the hardest of hearts.
He might only have half a ticker, but it’s full to the brim with love…
A doctor warned us to prepare for the worst…