‘Miracle docs saved my baby with a balloon in the womb while I watched on TV screen’

Henry, now 15 months, is fit and well says thrilled mother Emily (Image: Steve Bainbridge)

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With just a five per cent chance of survival, unborn Henry Black’s life dangled by the thinnest of threads.

Pioneering surgeon Professor Kypros Nicolaides told mum Emily Smith, then 27 weeks pregnant, that an operation was needed immediately.

Within an hour of diagnosis, and with Emily watching the whole drama unfold on a TV monitor, Prof Nicolaides inserted a tiny balloon into the baby’s windpipe and inflated it so his lungs could continue to develop in the womb.

It may be a cliché, but this was nothing short of a miracle. And while Emily, 32, could watch in awe, the whole world can too after the incredible procedure was filmed for the Bafta-winning Netflix show The Surgeon’s Cut.

The four-part special profiles surgeons from across the globe, including Britain’s Prof Nicolaides, known as the “father” of foetal keyhole operations.

What is your view? Have your say in the comment section

Little Henry spent months in hospital
(Image: ©2021 Steve Bainbridge)

Henry – now 15 months old – was diagnosed in utero with a severe CDH, congenital diaphragmatic hernia – a hole in the diaphragm.

The defect pushes the stomach, intestines and sometimes the liver up into the baby’s chest, affecting lung function.

Emily says: “It was amazing. I watched the whole thing on the TV screen.

“It felt like watching a movie about something not connected to me.

“I cry when I think how it could have been all so different. Even after the operation there was no certainty he would make it after being born. Henry was at the extreme end of severity.

“He had been given a lifeline but his chances were slim. We started looking into getting ready for a funeral because he had just a 5% chance.”

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Fighter Henry after his follow-up op
(Image: Steve Bainbridge)

Henry was treated at King’s College Hospital, in Camberwell, South London, in January 2020.

An international trial found the op doubles survival chances. So far, around 130 British babies have had the procedure.

Researchers hope it will be rolled out on the NHS to help 300 UK kids affected by the condition, fatal in nearly a third of cases.

The Surgeon’s Cut won the specialist factual category at last week’s Bafta Awards.

Prof Nicolaides, who has performed womb surgery for 40 years – saving hundreds of babies – is seen joking with Emily in the film.

TV drama as an op is filmed for Netflix
(Image: Netflix)

He offers reassurance as she watches the needle enter her stomach and then into her womb.

Mesmerising scenes show him guiding the balloon into place through Henry’s tiny mouth.

Emily was “in tears” when she watched the show on TV in December, adding: “Everything just came back to me.”

She and partner Stuart Black, 41, have four other children between them.

It was at her 20-week scan at Medway Maritime Hospital, close to her home in Chatham, Kent, that an abnormality with Henry was spotted.

Emily said she was in tears when she watched back the show
(Image: Netflix)

Due to a risk of miscarriage, medics waited seven weeks to draw fluid from his lung to get a better view. Emily was sent to Prof Nicolaides at King’s. A diagnosis of right-sided CDH was confirmed after an MRI.

“I was scared,” Emily says. “The professor mentioned a new operation that could save his life. When you hear those words you know it’s serious.”

Prof Nicolaides suggested foetal endoscopic tracheal occlusion, which he developed with Prof Jan Deprest at University Hospitals Leuven, Belgium.

It works by inserting a balloon into the baby’s windpipe and inflating it to stop vital amniotic fluid being forced out of the lungs by other organs – in Henry’s case, his liver.

Henry in 16-week scan
(Image: Steve Bainbridge)

Prof Nicolaides, 67, told Emily and civil engineer Stuart there was no time to spare.

She recalls: “He said that if I went home and came back Henry might not live. He wanted to operate there and then. Everything happened so quickly I didn’t have time to be frightened or cry. Stuart was holding my hand and Prof Nicolaides joked with me to keep my spirits up.

“It was only after we had got home that I broke down in tears at the enormity of what I had just been through.”

Two weeks later her waters broke but she didn’t go into labour. A week after that she was admitted to King’s College Hospital.

A diagram of how the balloon was inserted

The balloon is usually removed before the baby is born, but in Henry’s case it got stuck in his windpipe, so Emily had to remain in hospital until she gave birth.

Emily says: “I went into labour at 34 weeks. I was terrified he wouldn’t make it. It all happened very rapidly. Within half an hour of going into labour Henry was born.”

He arrived on March 14, weighing 7lb 14oz, delivered by a team of 15 doctors. His right lung was in poor shape and Henry was intubated, with his breathing taken over by a lifesupport machine. He spent six weeks in intensive care.

Emily admits: “We were scared for Henry’s life even after he was born. We’d go home at night worried that we’d get a call before the morning saying he had taken a turn for the worse or passed away.”

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Henry spent a further four weeks on the high-dependency unit and had two further minor ops. The balloon was removed at the Evelina London Children’s Hospital once he was stable. But he is now fighting fit.

His right lung is growing and by the time he goes to nursery doctors expect it to be a normal size.

Prof Nicolaides is hopeful more babies can be saved after results of a 10-year international clinical trial involving 287 women and their babies, including 95 from the UK, with a left-sided CDH.

Henry had a right-sided CDH but was among 35 UK babies treated on compassionate grounds. Funded by the EU, the op could be adopted by the NHS on the basis of the trial results.

Prof Nicolaides, who recently returned to work after fighting cancer, said: “In the beginning we had to cut open the mother, then do the same to get to the defect in the baby.

“Risks of complications were high. Now we do it all through tiny incisions. There are still risks, but it’s a lot safer. We are confident this will become a standard operation.”

Emily, meanwhile, is asking Netflix for a copy of the documentary to show Henry when he’s grown up.

But she adds: “I think Teletubbies and other kids’ stuff will come first!”

It took just a tiny belly cut, camera, balloon… and skill

Britain’s Prof Nicolaides is a pioneer
(Image: ©2020 Netflix, Inc.)

So what is the abnormality – and how does the new technique work?

Congenital diaphragmatic hernia (CDH) refers to an abnormal opening in the diaphragm. It can be on the right side – like Henry’s – or the left.

It is dangerous because it can push other organs into the baby’s chest, limiting lung function. The technique co-developed by Prof Nicolaides involves a 3mm cut – under local anaesthetic – in the belly of the mother at around 28 to 30 weeks.

A tiny camera is entered via the womb into the baby’s windpipe.

Next, a small balloon is inserted and inflated to block the windpipe. During pregnancy, the lungs do not contain air but produce some of the fluid in the womb.

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Temporarily blocking the pipe leads to a build-up of this fluid, stimulating growth in the lungs.

Several weeks later – usually before birth, though not in Henry’s case – the balloon is removed to allow the lungs to mature and to unblock the windpipe. A study just published in the New England Journal of Medicine showed the op doubles chances of survival.

Researchers now aim to fine-tune it to avoid potential risk of rupturing membranes, causing amniotic fluid to leak. This could trigger premature delivery.

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