When Vanellope Hope Wilkins’ parents first saw her as a foetus in her nine-week scan, they were confused by the unusual growth attached to her tiny developing body.
Dad Dean Wilkins says: “It looked like a little hamster with a hat on. But it wasn’t. It was her heart.”
The baby’s breast bone had failed to develop normally, causing her heart and part of her stomach to grow on the outside. The condition, called ectopia cordis, is so rare even the specialist doctor had to google it.
Children’s heart consultant Dr Frances Bu’Lock says: “There is little information available.
“I’d seen one [case] in foetal life around 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.”
Most babies with the condition suffer from defects of the heart itself and other abnormalities. Around 90% of them are stillborn, and most of those surviving birth die within days.
There were only a handful of cases worldwide where a baby has survived the condition, and none in the UK.
Mum Naomi Findlay was advised to terminate her pregnancy. Naomi, 31, says: “I burst into tears. Because it was meant to just be a dating scan, we’d taken the other kids with us.
“When we did the research we just couldn’t physically look because the condition came with so many problems. They said, ‘The chances of survival are next to none, the only option is to terminate’.”
But when she and Dean saw their daughter moving on the scanner, they knew they could not give up on her.
Dean, 43, says: “When she starts moving her arms, you feel like, ‘That’s a life in there, she is there’.” Naomi of Bulwell, Notts adds: “Termination was not an option for me.”
For the rest of her pregnancy Naomi was closely monitored by specialists, as she and Dean prayed their little fighter would make it.
Dean admits: “I lost hope a few times, if she didn’t move I’d say, ‘Has she moved today?’ Then the next thing she’d suddenly move and you’d go, ‘Oh she’s heard me’.”
Amazingly Vanellope continued to develop normally in the womb. She was due this Christmas Eve but was born five weeks early by Caesarean on November 22 weighing 4lb 7oz.
A team of 50 staff were on hand to assist with the delivery at Glenfield Hospital in Leicester.
Naomi felt “physically sick” with fear that her daughter would die.
She says: “When she came out crying that was it, the relief fell out of me.”
Dean adds: “Twenty minutes went by and she was still shouting her head off – it made us so joyful and teary.”
Within seconds of being born, Vanellope was wrapped in a sterile plastic bag to protect against infection.
Special lines were inserted into the umbilical cord when the baby was still attached to Naomi, to support her heart.
Just 50 minutes after birth, she had an operation to start the process of putting her heart back inside her chest.
A week later, a second op opened her chest wider to make more space for the heart, which sank into the cavity over the next two weeks thanks to gravity.
This allowed staff to carry out the final operation – taking skin from under her arms to cover the middle of her body. Surgeons also created a mesh to protect her heart as she does not have ribs or a sternum. Vanellope is still on a ventilator but surgeons are hopeful she will go on to lead a normal and healthy life.
Naomi says: “I just want to climb into her cot and take her place, just to let her breathe a little bit. I felt guilty for thinking negative thoughts, as here she is fighting and there was I, about to give up. I’m glad I stuck to my guns not to terminate.
Dean adds: “She is doing really well. She’s a fighter.” Vanellope is named after a character in the Disney film Wreck-It Ralph. Naomi says: “In the film she is so stubborn and 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 says it will also bring hope to others, adding: “Some mums still terminate. If we can get out there that there is a hope and it can be done then it’s giving all those mums out there a chance.”
There does not appear to be anything else wrong with Vanellope, which makes her case even more rare, says Branko Mimic, lead surgeon at East Midlands Congenital Heart Centre. But he adds: “While therefore it would seem more hopeful she will do well, it is almost impossible to be confident of this.”
In the US, Kieran Veitz of North Dakota was successfully treated for the condition in 2015. Now aged three, she has reached normal development for her age.
Vanellope’s parents have not yet been able to cuddle her because any movement could damage her heart.
Naomi says: “I just want to pick her up and hold her close and I wouldn’t want to put her down. Not having a cuddle is the hardest thing. I really long for it.”
Brothers Daniel, 13, Caleb, nine, and five-year-old Jacob are now waiting to welcome Vanellope home.
“They’re a bit scared, we all are, because so much is unknown,” says Dean. Naomi adds: “The medical staff have been absolutely amazing.
“I would run around and hug every single one of them if I could. They are miracles as much as Vanellope is.”
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