Baby becomes 'first in UK' to survive rare condition where her heart grows outside body
A BABY girl whose heart grows on the outside of her body has become the first child in the UK to survive being born with the ultra-rare condition.
Vanellope Hope Wilkins was due to be delivered on Christmas Eve before doctors made the shock discovery, leading to her being born prematurely by caesarean section three weeks ago.
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.
Her parents, Naomi Findlay and Dean Wilkins, of Bulwell, Nottinghamshire, said they were left shattered when doctors told them “termination” was the only option.
But after they defied medical advice, experts including the consultant cardiologist have said that they do not know of another case in the UK where a baby has managed to survive.
When we did the research we just couldn’t physically look because the condition came with so many problems
Now Vanellope, named after the feisty heroine in the Wreck It Ralph film, has given her parents a Christmas present they dared not wish for as she not only survived birth but three subsequent operations.
Mother-of-two Naomi, 31, said: “When we did the research we just couldn’t physically look because the condition came with so many problems.
“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.”
Dad Dean, 43, a builder, revealed the couple were told the first 10 minutes after birth were crucial.
He said: “What they said is, when the baby is born she has got to be able to breathe in our oxygen.
“Twenty minutes went by and she was still shouting her head off - it made us so joyful and teary.”
A team of around 50 staff were involved in the birth at Glenfield Hospital in Leicester on November 22 as Vanellope was born and immediately wrapped in a sterile plastic bag.
She was then taken into an adjoining anaesthetic room where senior neonatal specialists inserted a breathing tube and drips, and then anaesthetised her.
The first operation involved special lines being inserted into the blood vessels in her umbilical cord to give fluids and medications to support her heart, and to monitor her blood pressure accurately.
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 inside her body.
In the average baby, there is an indent on the left lung which creates space for the heart - but Vanellope did not have this.
Instead over a period of two weeks the heart naturally made its way back into the chest due to 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.
Previous estimates show five to eight babies per million are born with ectopia cordis and serious congenital malformation and they generally have less than a 10 per cent chance of survival.
Frances Bu’Lock, the consultant paediatric cardiologist at Glenfield Hospital, admitted describing the 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 almost impossible to be confident of this.”