A mother who refused to terminate her pregnancy is celebrating her 'miracle baby' – believed to be the first in the UK to survive after being born with her heart outside her body.
The Daily Telegraph reports that Naomi Findlay and Dean Wilkins, of Bulwell, Nottinghamshire, were warned that the extremely rare condition meant almost no chance of survival. Now, they have told of their anxious wait after baby Vanellope Hope was born, with doctors warning that the first 10 minutes would prove crucial. Wilkins said: “Both Naomi and I were holding our breath waiting for her to take her first breath; we didn’t dare breathe until she took her first breath. “When she cried, we cried. I felt hopeless and just held onto Naomi and was staring into her eyes praying that it was all going to be ok. Twenty minutes went by and she was still shouting her head off – it made us so joyful and teary,” Wilkins said.
The report says Vanellope was due to be delivered on Christmas Eve before the rare condition meant she had to be born prematurely by caesarean section on 22 November at Glenfield Hospital in Leicester.
The condition, ectopia cordis, which was discovered during a scan after nine weeks' pregnancy, showed the baby's heart and part of her stomach were growing on the outside of her body.
The first scans led doctors to tell them that termination was the only option, the couple said. Wilkins said: "We were told that our best bet was to terminate and my whole world just fell to bits." Findley, a mother-of-two, said: "All the way through it, it was 'the chances of survival are next to none, the only option is to terminate, we can offer counselling' and things like that. In the end I just said that termination is not an option for me, if it was to happen naturally then so be it."
The report says within an hour of being born, a team of around 50 staff assembled to carry out the first of three operations, over several weeks, to put her heart back fully inside her chest. The series of procedures, with special lines inserted into her umbilical cord to give fluid and medication to support her heart, saw the chest gradually opened to create more space for the heart to fit back in.
After seven days, medics decided they could conduct the second operation, which was to open her chest a bit more so they could create more space for the heart to fit back in.
Normally, there is an indent on the left lung which creates space for the heart – but Vanellope did not have this.
Over a period of around two weeks, the heart naturally made its way back into the chest following gravity. This allowed staff to carry out the final operation which involved taking skin from under her arms and moving it round to join in the middle of her body.
Surgeons had created a mesh which protected the heart as she did not have ribs or a sternum.
The report says as her organs fight for space inside her chest, Vanellope is still attached to a ventilation machine.
Wilkins said: “The moment she was born I realised that we had made the right decision. We know this is going to be a rollercoaster and have started to prepare ourselves for the difficult times ahead, but we needed to give her a chance, and the team here have done that."
East Midlands Congenital Heart Centre lead surgeon Branko Mimic is quoted in the report as saying: "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 almost impossible to be confident of this."
Estimates suggest that five to eight babies per million are born with ectopia cordis and serious congenital malformation in which the heart is abnormally located either partially or totally outside of the chest. Babies born with the condition generally have less than a 10% chance of survival.
[link url="http://www.telegraph.co.uk/news/2017/12/12/miracle-baby-born-heart-outside-body-first-survive-uk/"]The Daily Telegraph report[/link]