Was my baby’s dangerous condition my fault?
Aimee Roberts, 25, Bristol
When I’d become pregnant in the spring of 2017, I prayed my little one wouldn’t quite follow in the family footsteps.
My mum Julie, 53, and I had both been born with patent ductus arteriosus (PDA). It meant we’d had holes in our hearts, and had both needed surgery.
Now we were healthy, but the ops had been dangerous.
At my 20-week scan I prayed for good news. But…
‘It looks like he has a hole in his heart,’ the sonographer confirmed.
Hope fading, I didn’t dare ask my burning question…
‘Will he be OK?’ my partner Alex, 25, said instead.
Our baby had a ventricular septal defect (VSD), a small hole separating the two chambers of his heart.
The doctors were hopeful he wouldn’t need surgery, monitored him closely with scans every three weeks.
We welcomed little Leo on the 6 November 2017, weighing 7lb 1oz.
With luck, we’d be home in two days.
But something wasn’t right. He had cold feet, his breathing was uneven.
I asked for an echo, a heart scan, just to check – and Leo was diagnosed with three more heart problems.
He had PDA like Mum and me, a hole that should close in 48 hours after birth, but hadn’t.
He had a bicuspid aortic valve, which can block blood flow and couldn’t be cured.
And he had coarctation of the aorta (COA), which stops blood flowing to the bottom of the body, and multiple VSDS – spotted before his birth. I just wanted to cuddle my baby, but what if I never got the chance? And part of me wondered…
Was this my fault? Had I given my baby a broken heart?
It wasn’t certain it was genetic, but all that mattered now was doing what we could. ‘Can we hold him?’ Alex asked, sensing my longing.
‘And can I feed him?’ I pleaded. ‘Can I do anything?’
Leo was my baby, but it felt as if he didn’t belong to me, that until he was better I couldn’t be his mummy. It tore me apart. Days later, Leo was taken to the Children’s Hospital in Bristol for open-heart surgery.
It was risky. There were no guarantees Leo would make it.
And if he did, he could be left paralysed or brain dead...
Eight hours later, we were taken to see him. The doctors had cooled his body to protect his brain during the op. He was still icy-cold.
He was sedated, not in any discomfort, and I wanted to snuggle him in a blanket, rock him. But I couldn’t do anything.
Leo suffered complications and infections. It felt like one hit after another.
One morning, I put my hand in his incubator and whispered, ‘You’ll be OK, little man.’
He squeezed my finger, as if to say, ‘I’m all right, Mum.’
It gave me hope. Eventually, Leo was out of the woods and, two days before Christmas, he came home.
The op mended the PDA and COA, but there was a chance he’d need further surgery in the future.
And a vocal nerve was damaged in surgery. We won’t know how serious it is, until he starts to talk.
In one sense, we were lucky. With my mum and I having experienced heart conditions, I’d known what to look out for. Many families don’t.
That’s why we’re working with the British Heart Foundation to raise awareness of the signs to watch for in newborns, like cold hands and feet, and laboured breathing.
If we know the signs and can fund surgeons like Leo’s for specialist training, then a lot more lives could be saved.
I’m just so thankful that Leo, now 1, is alive and happy.
He’s a fighter, and even though his heart’s a little bit broken, his spirit certainly isn’t.
I wanted to cuddle my baby. What if I never got the chance?