Saturday, 20 January, 2018

She Had a Heart. The Problem: It Was Outside Her Chest

Vanellope Hope post surgery Baby Vanellope Hope Wilkins after her surgery. University Hospitals of Leicester NHS Trust
Melissa Porter | 13 December, 2017, 21:22

Doctors have described how dozens of specialists worked together to help a baby who became the first in the United Kingdom to survive after being born with its heart outside its chest.

But the Nottinghamshire parents ignored the doctor's advice to terminate their daughter - originally due on Christmas Eve but born prematurely by caesarean on November 22.

It took two more weeks for her heart, under gravity, to sink back into her chest, allowing for the third surgery, which was to take skin from under her arms and to wrap it over her chest cavity.

When the parent's got the news nine weeks into Findley's pregnancy, their "whole world just fell to bits".

"I had prepared myself for the worst; that was my way of dealing with it".

"Both Naomi and I were holding our breath waiting for her to take her first breath; we didn't dare breath until she took her first breath", Wilkins, 43, said.

"I genuinely didn't think my baby would survive, but the staff at Glenfield have been wonderful. The chances against her surviving at that stage was huge".

Naomi told me: "It was a real shock when the ultrasound showed that her heart was outside her chest and scary because we didn't know what would happen".

"We had to assemble teams of obstetric doctors, neo-natal doctors, anaesthetists, cardiac surgeons, because they have expertise in this area - get them all up to the operating theatre in Glenfield and deliver Naomi, and... get baby Vanellope out; we had to deliver her early - and then start to think about getting the heart covered". "There were so many difficulties - she might have other body organ problems".

Vanellope Hope Wilkins born
Vanellope was born with her heart located outside her chest. Glenfield Hospital University Hospitals of Leicester NHS Trust

Frances Bu'Lock, consultant paediatric cardiologist said: "Before she was born things looked very bleak but now they are quite a lot better - Vanellope is doing really well and has proved very resilient".

East Midlands Congenital Heart Centre lead surgeon Branko Mimic said: "Cases such as Vanellope's, where everything else appears essentially normal, are even rarer, and whilst therefore it would seem more hopeful she will do well, it is therefore nearly impossible to be confident of this".

Baby Vanelope was taken to surgery within an hour of being born.

Vanellope Wilkins heart operation.

"When she cried, we cried".

Consultant Neonatologist Jonathan Cusack said: "Vanellope was born in good condition".

A week later, surgeons began the second operation to open her chest some more in order to provide space for her heart to fit inside.

Babies born with the condition generally have less than a 10 per cent chance of survival, depending on the risks of other conditions as well as the ability to place the baby's heart safely in the chest. "We know this is going to be a roller coaster and have started to prepare ourselves for the hard times ahead, but we needed to give her a chance, and the team here have done that", Wilkins said.

Dean said: "The moment she was born I realised that we had made the right decision".