Health

Was my baby’s danger­ous con­di­tion my fault?

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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?

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