Girl born with heart OUTSIDE her body and given ‘next to no hope’ survival is first baby in Britain to survive condition
A BABY who was born with her heart outside her body has undergone a groundbreaking operation to protect the fragile organ.
Vanellope Hope Wilkins, now seven, beat eight-million-to-one odds after she became the first baby in Britain to survive the ultra-rare condition.
She was diagnosed in the womb with ectopia cordis in which the heart is located either partially or totally outside of the chest.
Her parents were told there was “next to no hope” when the abnormality was picked up at a nine-week scan and they were advised to terminate the pregnancy.
But mum Naomi Findlay and dad Dean Wilkins refused to give up hope and Vanellope was delivered by C-section at Leicester’s Glenfield Hospital in November 2017.
Most babies affected have a less than 10 per cent chance of survival but battling Vanellope defied the odds.
Doctors said they knew of only a handful of cases worldwide where a baby has survived the condition – and none in Britain.
Experts at University Hospitals of Leicester NHS Trust have been working for seven years to monitor her progress and prepare her for a groundbreaking operation.
Last Wednesday (16/4) she underwent an eight-hour procedure to reconstruct her chest using her ribs in order to protect her heart as she grows.
Naomi, of Bullwell, Notts. said: “It’s the fear of the unknown that is the hardest part and saying goodbye before the operation was very hard.
“But when I saw the consultants walking towards me after the surgery, I just knew from their faces that it had gone well, and I instantly felt a huge sense of relief.
“What they have done is truly amazing and I am so in awe of them, I can already see what a difference this operation has made, and I cannot thank everyone involved in her care enough.
“Vanellope inspires me every day, she is strong and brave, and I am so proud of her.”
The operation took place at the East Midlands Congenital Heart Centre based at Leicester Royal Infirmary.
It involved Vanellope being put onto a heart-lung machine called an extracorporeal membrane oxygenation (ECMO) machine – a medical device that temporarily takes over the functions of the heart and lungs.
This allowed the medical team to carefully detach her heart from a thin layer of skin and carry out a bilateral osteotomy of the ribs, to allow them to be ‘stretched’ forwards and be joined together at the front to reconstruct her chest solidly.
The team included consultant paediatric surgeon, Nitin Patwardhan, and Ikenna Omeje, consultant congenital cardiac surgeon.
They were supported by visiting cardiothoracic surgeon, Nagarajan Muthialu, from Great Ormond Street Hospital for Children NHS Foundation Trust.
Speaking about the operation, Mr Omeje, said: “Vanellope’s case is completely unique and very rare, so we brought our expertise together and combined several different techniques to perform this surgery.
“I was there seven years ago when Vanellope was born as part of the team who were there to protect her heart.
“Since then, we have been waiting for the right opportunity to close the chest and give her heart protection.
“It was a tricky procedure, and it has been a long journey to get to this point, but the sense of satisfaction you get knowing you have been successful is very special.
“I am just happy to be able to help.”
Consultant paediatric surgeon at Leicester Children’s Hospital, Nitin Patwardhan, added: “Being able to perform a groundbreaking surgery, which has never been done before in the UK, is important for our patients and for the hospital.
“Our teams do incredible work every single day, and this procedure is another example of this.
“Vanellope is a one-of-a-kind case and I am proud that we have been able to work together to improve her quality of life.
“We wish her a speedy recovery and all the best for the future.”
What is ectopia cordis?
Ectopia cordis is a rare condition where the heart is located outside of the chest, either partially or completely.
It usually occurs early in pregnancy, during the development of the baby.
The cause isn’t always clear but can sometimes be linked to genetic conditions.
It’s a serious condition, and babies born with it often need immediate medical care after birth.
Treatment may involve surgery to place the heart back in the chest, but the chances of survival depend on the severity and associated health problems.
Early diagnosis and specialist care are crucial.
Source: NHS England