Saved, baby born with heart outside her body
DOCTORS said her chances of survival were ‘next to zero’.
But baby Vanellope Hope – who was born with her heart outside her body – has defied eight-in-a-million odds and is three weeks old today.
It took a team of 50 doctors, midwives and nurses to safely deliver her in an operation that is rarely successful.
And yesterday her joyful parents, who dismissed early advice to terminate the pregnancy, showed off the miracle daughter they never thought they would have.
Vanellope is recovering from three extraordinary operations to move her heart inside her body. Her condition, ectopia cordis, was discovered during a scan at nine weeks into pregnancy. Her mother Naomi Findlay, 31, recalled: ‘I burst into tears. The condition came with so many problems.’
Her partner Dean Wilkins, 43, said: ‘We were told our best bet was to terminate – and my whole world just fell to bits.’ Miss Findlay added: ‘All the way through it, 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 [death] was to happen naturally, then so be it.’
The parents were warned their baby might have chromosomal abnormalities and damage to her heart and circulation.
But hope began to return when Dr Frances Bu’Lock, consultant paediatric cardiologist at Glenfield Hospital in Leicester, conducted further scans at 13 and 16 weeks and discovered that – apart from her heart being in the wrong place – Vanellope ‘appeared essentially normal’.
The couple, from Nottingham, paid for a special blood test to check for chromosomal problems. Mr Wilkins said: ‘When the results of that test came back as low risk of any abnormalities, we jumped up and down in the living room and cried. At that point we decided to fight to give our daughter the best chance of surviving.’
Doctors began drawing up a hugely complex plan to help Vanellope survive, conducting ultrasound and MRI scans.
Dr Bu’Lock said: ‘ We came together as a team of fetal medicine doctors, obstetricians, anaesthetists, cardiac and abdominal surgeons and cardiologists to review all of the available information and discuss how best to plan for a delivery, surgery and subsequent care.’
They decided that delivery by caesarian section would be the safest, to reduce risk of infection or squashing the heart during birth. On November 22, 35 weeks into pregnancy, Miss Findlay was wheeled into a cardiac theatre and at 9.50am, baby Vanellope was born. Vanellope’s body was immediately wrapped in a sterile plastic bag to keep her organs moist and free of infection.
Her head was kept outside the bag, with a woolly hat to keep warm, and she was given a breathing tube. Lines into her umbilical cord fed her fluids and medication to stop her moving.
Around 50 minutes after birth, Vanellope was stable enough for surgical teams to begin moving her heart into her chest. Surgeons carefully stretched apart a two pence-sized hole in chest and covered her heart with a protective membrane. Over the next nine days, Vanellope lay on her back in intensive care as the heart gradually sank into the hole. The temporary membrane was then replaced with a permanent one.
Finally, surgeons made cuts in her skin from her armpits down to her hips so they could stretch her chest skin to cover the hole and stitch it up.
As her organs fight for space inside her chest, Vanellope is still attached to a ventilation machine – but her chances of long-term survival are improving by the day.
Dr Bu’Lock said no records exist as to how many times the operation had been done before but that it was one of the first to have taken place in Britain. She said: ‘It is certainly the first in recent years. In the past this condition was not usually picked up before birth, so this procedure was attempted but the vast majority died. It is likely that there have been survivors but they are very, very few and far between.’
Mr Wilkins, who has two other children from a previous relationship, and Miss Findlay, who has a six-year- old son, said Vanellope was named after a character in the Disney film Wreck It Ralph.
Miss Findlay said: ‘Vanellope in the film is so stubborn and she turns into a princess at the end so it was so fitting.’
She added: ‘I genuinely didn’t think my baby would survive, but the staff at Glenfield have been amazing... I can’t put in words how grateful I am for everything they have done.’
‘Jumped up and down and cried’