Miracle baby born with heart outside body due to extremely rare condition

  • 14/12/2017

A baby has been born with her heart outside of her body due to an incredibly rare medical condition.

Vanellope Hope was expected to be born on Christmas Eve, but the discovery of the condition called Ectopia cordis meant her birth had to be brought forward.

A team of 50 medical staff at Glenfield Hospital in Leicester in the UK helped to bring the baby into the world safely on November 22nd.

Her parents Naomi Findlay and Dean Wilkins found out they were expecting their first child in June, but a scan at nine weeks brought the news that their baby's heart and parts of her stomach had started to grow outside of her body.

They were offered counselling and support from the hospital as they were taught about the major risks facing their baby, and the possibility that the pregnancy could end before she was born.

"We decided to fight to give our daughter the best chance of surviving," Mr Wilkins said.

Fetal cardiology consultant Frances Bu'Lock said: "Naomi and Dean understood that for their baby to have any chance of survival outside the womb, Naomi would need to get to as close to her due date as possible, and baby would need to grow well and not to develop any other problems."

As soon as Vanellope Hope was born, she needed surgery. Doctors had to work to keep the heart safe and covered, so they can later perform surgery to put it back into the chest cavity and cover it with skin.

"However, chances of successful surgery and long term survival were very poor; they understood that and wanted to continue with the pregnancy," Dr Bu'Lock said.

A team of fetal medicine doctors, obstetricians, anaesthetists, cardiac and abdominal surgeons and cardiologists worked together to prepare for the birth.  

A team of fetal medicine doctors, obstetricians, anaesthetists, cardiac and abdominal surgeons and cardiologists worked together to prepare for the birth.
A team of fetal medicine doctors, obstetricians, anaesthetists, cardiac and abdominal surgeons and cardiologists worked together to prepare for the birth. Photo credit: Leicester Hospitals

"It was decided that delivery by caesarean section would be best to reduce the risks of infection, risks of trauma or squashing of the heart during delivery, and that surgery to provide some sort of covering to the heart would be needed immediately after baby was delivered," Dr Bu'Lock said.

Mr Findlay said when they went into the theatre for the cesarean procedure, "Both Naomi and I were holding our breath waiting to take her 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."

Babies born with the condition usually have a 10 percent chance of survival, and the condition only affects one in every five to eight million births.

Vanellope Hope will remain in intensive care for several weeks with her family by her side while she gets strong enough for further surgery to place her heart fully within her chest.

Her mother Naomi said "I had prepared myself for the worst; that was my way of dealing with it. I had brought an outfit to hospital that she could wear if she died"

She said the medical staff had supported them and kept them involved in all of the plans to keep the baby safe.

"I can't put in words how grateful I am for everything they have done. They are amazing!"

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