A rare condition meant that my baby was born twice

‘You want to operate while he’s still in my womb?’ I asked incredulously.

I’d never even heard of foetal surgery when doctors first suggested it. I was sitting in a hospital side room with my husband, 16-weeks pregnant and terrified as they told us our unborn baby may not have any quality of life. 

We quizzed them on how it would work, asking so many questions. I was worried my baby might feel the procedure but the doctors reassured me he would be given the same pain relief as me.

They explained that it would be pioneering surgery that would be covered by the NHS but performed at a specialist centre in Belgium. Essentially, he’d be tugged from my uterus bottom-first, operated on, and then popped back in again so I could continue with my pregnancy.

That’s because prenatal tests at the time revealed that our little one had a severe form of spina bifida and this operation would give him his best chance of living a normal life.

The surgery needed to be done before I reached 26-weeks. They told us to go away and have a think about it, but as soon as my husband and I walked out of the room, we turned to each other and both said we wanted to give it a go.

Having my baby operated on while I was still pregnant sounded terrifying – but we had to try.

This was the best decision we ever made because it saved his life. It meant that he was essentially born twice.

Our family’s story began in the traditional way – boy meets girl. I met my now-husband David online in spring 2014.

I couldn’t believe it when he told me his birthday was Christmas Day; we even joked about Christmas being doubly expensive for me if things got serious. 

We’d been trying for a baby for two-and-a-half years when I finally fell pregnant six months after our September 2019 wedding.

We booked a private 3D scan at 16-weeks and planned a gender reveal party in our back garden for later that day. But in addition to discovering we were expecting a little boy, the radiographer found something worrying on the scan.

They described it as our baby having a lemon-shaped head and a banana cerebellum, which was terrifying because we had no idea what it meant, and referred us to hospital for further tests.

With family and friends waiting in our garden, we plastered smiles on our faces and went ahead with our party, putting on a brave face as we popped the balloon to reveal blue confetti.

At the Royal Victoria Hospital in Newcastle a week later, tests revealed our unborn son had the most severe form of spina bifida, called myelomeningocele. There was a hole in our baby’s back, allowing his spinal cord and nerves to push out and form a sac outside his tiny body.

The specialist didn’t mince his words – warning us our baby faced a poor quality of life.

It felt like the world was just standing still as he explained we had three options. We could terminate the pregnancy, but David and I shook our heads straight away. We couldn’t give up without a fight.

We could choose to go ahead with the pregnancy and hope surgery after birth might improve our child’s quality of life. Or our third option was the foetal surgery to operate on our baby while he was still in my womb, which we went for in the end.

By this point, we’d already named our baby Preston – we’d had it picked out for a boy since we started trying.

In September 2020, we flew out to Belgium for the procedure at the UZ Leuven Gasthuisberg Campus. It followed weeks of tests and scans to make sure that Preston met the criteria, which included double checking he didn’t have any other serious medical problems and that the lesion on his back was in a suitable place to operate. 

On the day of the surgery, I’d been warned there was a high risk of me going into premature labour on the operating table. I’ll never forget walking down to the theatre, crying my eyes out and trembling all over, with no idea whether I was about to save my baby or lose him.

During the seven-hour operation, surgeons cut into my womb in the same way as a caesarean section. They operated on Preston’s spine and closed the hole in his back, before returning him safely to my uterus. Outside in the waiting area, David’s biggest fear was that he could lose us both – he said afterwards he’d been petrified. 

Coming round in recovery, my first thought was to look down at my belly. I was so thankful to see he was still in there although it was strange to think he’d effectively been born, then put back in again.

I stayed in hospital in Belgium for a week and felt very sore – Preston was kicking against my stitches. The epidural also affected a nerve in my leg. 

Flying back to the UK, we prayed that the rest of my pregnancy would go smoothly. But as we neared Christmas, tests showed another complication – a build-up of fluid on Preston’s brain called hydrocephalus. It had the potential to cause brain damage if left untreated. 

On 14 December 2020 – at 36 weeks – doctors decided it was time for our son to make an appearance for the second time. He was our extra special Christmas delivery, born via C-section weighing just under 7lbs, bearing a red surgery scar across his lower back.

He was rushed straight to neonatal intensive care to be checked over, but they put him on my chest for a couple of seconds first and I felt an overwhelming rush of relief.  

After a week in the neonatal unit, we brought him home on 23 December, just in time for Christmas – and his daddy’s birthday!

We snuggled up in our matching festive PJs on Christmas Eve with Home Alone on telly, feeling like the luckiest family.

The following month, Preston underwent further surgery to fit a shunt into his head to drain the excess fluid, but since then he’s gone from strength to strength.

Now this time of year feels like one celebration after another. On 29 September, we kick things off with ‘Preston’s Butt Day’, getting special banners printed and cakes iced with ‘Happy Butt Day Preston!’, which certainly raises a few eyebrows.

Then on 14 December, it’s his birthday. He’s just turned two and he’s like any other happy, bouncy toddler, into everything, meeting his milestones and finding his feet.

Watching him tugging on the bottom branches of the Christmas tree, threatening to topple it over, it’s hard to believe this is the child doctors told us would have no quality of life.

Looking back, saying ‘yes’ to foetal surgery was one of the most important – and best – decisions of our lives. 

All I know now is that, with two Christmas birthday boys in the family, December is even more expensive – but I wouldn’t have it any other way.

As told to Jade Beecroft

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