Baby born with heart on the outside beats the odds
MIRACLE baby Vanellope Hope Wilkins has made medical history by surviving despite her heart growing on the outside of her body.
Cardiac experts at Leicester’s Glenfield Hospital performed three operations to save the infant in what is believed to be a UK first.
Vanellope, named after the feisty princess in Disney’s Wreck-It Ralph, was delivered by caesarean section around a month early.
Fewer than 10 babies in a million have the condition, and surgery has not previously managed to save any of them.
Parents, Naomi Findlay and Dean Wilkins, had been warned nine weeks into the pregnancy that little Vanellope had ectopia cordis and termination was the best option.
Despite this Naomi was determined to give birth, and Vanellope was delivered on November 22 with the specialists at Glenfield - the heart centre recently saved from closure - pulling out all the stops to keep her alive.
Although the tot is still attached to a ventilation machine, she has made it through the toughest time and her heart is now inside her chest.
Speaking of the day she found out about her daughter’s condition, Naomi said: “I burst into tears.
“When we did the research we just couldn’t physically look because the condition came with so many problems.
“All the way through 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.”
Recalling how she felt like at the birth, the 31-year-old said: “I started to panic. I actually felt physically sick.
“But when she came out and she came out crying that was it - the relief fell out of me.”
Builder Dean, 43, said: “When we were told our best bet was to terminate, my whole world just fell to bits.
“What they said is, when the baby is born she has got to be able to breathe in our oxygen.
“Twenty minutes went by (after the birth) and she was still shouting her head off - it made us so joyful and teary.”
Frances Bu’Lock, the consultant paediatric cardiologist at Glenfield Hospital, said she described the chances of the baby surviving as “remote”.
She said: “I had seen a case about 20 years ago but that pregnancy was ended.
“I did a quick Google search, as everyone does, and then more of a literature search but that didn’t inform me an awful lot because there’s not much to go on and the cases are all very different.”
Looking back on the pregnancy, Dean said the months were “horrible”.
He said: “I lost hope a few times.
“If she didn’t move I’d say ‘has she moved today?’, and then the next thing she’d suddenly move and you’d go, ‘oh she’s heard me’.
“These past eight months have been horrible.”
Explaining why they chose the name Vanellope Hope, Dean said: “We ended up watching a film with the lads, Wreck-It Ralph, and there’s a little girl called Vanellope, known as the Glitch.
“All the odds she was fighting and the fact she wanted to be a racer made me determined that’s what she would be called.”
Naomi said: “Vanellope in the film is so stubborn and she turns into a princess at the end, so it was so fitting.
“The Hope part is the fact that she has brought us hope.”
Dean said it also stood as a message of hope for everybody else.
He said: “Some mums still terminate and if we can get out there that there is a hope, and that it can be done, then it’s giving all those mums out there a chance.
“Even if years go by she will still be remembered as a reminder that there is that hope.”
Vanellope needed three operations to survive after she was born.
On the day of her delivery by caesarean a team of around 50 staff got together from 8am with specialised equipment before a theatre briefing at 8.30am.
Naomi was wheeled into theatre just after 9am and Vanellope was born 50 minutes later and was immediately wrapped in a sterile plastic bag.
The baby was then taken into an adjoining room where neonatal specialists inserted a breathing tube and drips and then anaesthetised her.
Consultant neonatologist Jonathan Cusack said: “At around 50 minutes of age it was felt that Vanellope was stable enough to be transferred back to the main theatre where she had been born to the waiting anaesthetists, congenital heart disease and paediatric surgical teams who began the task of putting her entire heart back inside her chest.”
Vanellope, whose parents are from Bulwell, in Nottinghamshire, was transferred to the paediatric intensive care unit at 1.35pm.
During the operations, the surgeons had to create a hole in her chest and then allowed the heart, and part of her stomach, to slowly slide back inside her body through gravity alone.
Then skin from under her arms was used to cover the hole and a special mesh was created around her heart.