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7th March 2016

Saving babies in the womb

Doctors gave Hope Rollings a 10-20% chance of survival even before she was born. Today, the lively toddler is about to celebrate her 3rd birthday, thanks to life-saving surgery she had while still in the womb.

At her 20-week scan, Hope’s mum Sarah got the crushing news that every mum-to-be dreads. Her unborn daughter had a life-threatening condition called congenital diaphragmatic hernia (CDH).

Hope was missing her diaphragm ‒ the sheet of muscle that separates the chest from the abdomen ‒ causing her major organs to move up into her chest cavity and leaving no space for her lungs to develop. None of the choices offered to Sarah and her husband Luke were optimal: do nothing and see what happened; terminate the pregnancy; or see if Sarah was a suitable candidate for an experimental procedure known as FETO (fetoscopic tracheal occlusion), which involved surgery on the baby while she was still inside Sarah’s womb.

The couple made the hardest decision of their lives and went with the third option. It wasn’t guaranteed to work and there was a high risk of miscarriage, but it raised the odds of Hope’s survival to 50%. “I felt very scared at the time and wasn’t a hundred percent sure that I was doing the right thing. However, I knew that I needed to do it,” Sarah tells This Is Medtech.

She had the in-womb operation six weeks later. The 30-minute surgery was minimally invasive ‒ only a small incision was made in Sarah’s abdomen, where a tube holding a tiny balloon was inserted and then guided down Hope’s throat using special imaging technology.ts

Sarah and Luke watched on screen while world-renowned foetal medicine consultant Professor Kypros Nicolaides inserted the balloon into the baby’s windpipe to block fluid that would normally leave the lungs, thus allowing them to grow.

“The whole thing was a bit strange to be honest. It was very odd to see them do the procedure and it was also amazing at the same time as we were able to see her little face and her features,” remembers Sarah.

“Looking back now, I know that we were lucky to go through the surgery. We know it’s not right for everyone but we were lucky enough to be given the chance,” she adds.

Regular scans monitored Hope’s lungs until the second phase of FETO, which involved going back into the womb and popping the balloon with an ultrasound-guided needle at week 34. “It was the worst bit and the most distressing thing of it all apart from not knowing what the outcome for Hope would be,” recalls Sarah.

Her baby girl arrived the following week. “It was very traumatic, as Hope had to be paralysed with an injection when she was born, so she didn’t breathe on her own,” Sarah recounts in an article published just before her daughter’s first birthday.

When she was five days old, Hope had to undergo a three-hour operation to reposition her organs and have a synthetic patch inserted where her diaphragm should have been. Since then, she’s had two more surgeries. “We know she’ll need another one as she gets older but we don’t know when,” explains Sarah. Nonetheless, Hope is now doing well aside from some problems with sleep and reflux.

“She is going to be three next week. I don’t know where the time has gone. When I look back at the last three years I think she has been through so much in such a short space of time,” Sarah comments. Despite enduring a roller coaster journey, she says she “would totally go through it again if put in the same situation”.