At 9 months old, little Vanellope Wilkins finally gets to go home — though for now, it will be in a series of short visits.
She was born with her heart outside her chest and lacking a breast bone. Her condition is so rare, she was given less than a 10-percent chance of surviving.
She was less than an hour old when she underwent her first surgery, and she's undergone several more since. All were designed to get her heart back inside her tiny body, and there it lies now, pumping away as it always has.
"That's what keeps me going," says her mom, Naomi Findlay. "Knowing that she's fought all the way to be here."
This 'miracle baby' was born with her heart outside of her chest.— Channel 4 News (@Channel4News) December 13, 2017
Vanellope Hope Wilkins is the first baby in the UK to survive her rare condition. pic.twitter.com/nXi4r1hGnj
Vanellope is now in a period of transition as her parents learn to care for her, and all her attendant machines, inside the family home. In essence, they have recreated a neonatal intensive care unit inside Vanellope's bedroom.
"It's daunting. It's the 'what if?' you get constantly going 'round in your head," Findlay told the BBC. "And then again, it's putting everything you've learned into place.
Vanellope, who was named after the female character in "Wreck-It Ralph," is the first baby born in Britain to survive her condition. She was due last Christmas Eve, but was delivered on Nov. 22 by cesarean section because of her heart problems.
Findlay was nine weeks along when doctors determined her daughter's heart was in the wrong place. She was advised to have an abortion, but the parents refused.
Since arriving in the world, she has defied the odds. She has no breastbone, meaning there is no support for her rib cage. She has trouble breathing and is hooked to an oxygen machine. But medical staff fitted her with a special jacket that basically acts as an exoskeleton, giving support to her ribs and internal organs from the outside.
Vanellope has two older brothers, Caleb, 9, and Jacob, 5, who dote on her.
"It's been a roller coaster ride, but it's our time now," her mother said. "We can finally be a family again."