Mother of baby with heart on chest wants her home for Xmas

The parents of the miracle baby who was born with her heart growing outside her body said they hope to have their daughter home for Christmas.

Vanellope Hope defied eight-in-a-million odds after surviving birth despite the vital organ being located on her chest.

Speaking to the Sun, her mother, Naomi Findley, said: ‘I want her there when we open presents around our Christmas tree. A huge part of the family will be missing if she’s not with us.

Vanellope Hope’s parents, Naomi Findlay and Dean Wilkins, of Bulwell, Nottinghamshire, said the first scans led doctors to tell them that ‘termination’ was the only option

The condition, ectopia cordis, was discovered during a scan after nine weeks¿ pregnancy

The condition, ectopia cordis, was discovered during a scan after nine weeks’ pregnancy

The youngster was due to be delivered on Christmas Eve before a rare condition meant she had to be born prematurely by caesarean section on November 22

The youngster was due to be delivered on Christmas Eve before a rare condition meant she had to be born prematurely by caesarean section on November 22

‘Jacob [one of her sons] knew something was wrong and would hold my hand or cuddle me. And it was hard for Caleb [second son] to see Vanellope in hospital. But both the boys love her very much and want her home. It would make their Christmas dreams come true.’ 

Her partner, Dean Wilkins, said: ‘She is absolutely gorgeous and I am incredibly proud of her. All I want is to snuggle up with her and the boys on the sofa this Christmas.’

Earlier this week, Glenfield Hospital in Leicestershire confirmed Vanellope Hope survived three operations to fix the unusual condition, called ectopia cordis.

Dr. Nick Moore said the baby is in the hospital’s pediatric intensive care unit.

He said: ‘She has a long way to go but so far at least she now has a chance at a future.’

Most babies born with this condition do not survive although there have been some cases in which surgery has been successful. Infection poses a severe risk to babies with this condition.

Miss Findley, who was told the chances of her baby surviving were ‘next to zero’ when doctors diagnosed her with a rare condition at just nine weeks pregnant, spoke about her desperation to cradle her baby for the first time during a This Morning interview on Wednesday. 

‘She’s doing really, really well,’ Miss Findley said. ‘She’s moving around a lot. She’s a lot more alert. It’s lovely to see her doing what little babies do. She’s lovely. She’s a joy.’

Asked by presenters Phillip Schofield and Holly Willoughby whether she has been able to give her daughter a cuddle, Naomi replied: ‘No, that’s one of the things I am absolutely longing for. 

‘I dream of that day, honestly, and I don’t think I’ll put her down.’

It took an incredible team of 50 doctors, midwives and nurses to safely deliver Vanellope in an operation rarely successfully performed in Britain.

Her joyful parents – who had dismissed early advice to terminate the pregnancy – are now showing off the miracle daughter they never thought they would have.

Miss Findlay, 31 ,said her daughter is doing 'really, really well' and that she is desperate to cradle daughter Vanellope Hope in her arms for the first time since her operation during an interview with This Morning

Miss Findlay, 31 ,said her daughter is doing ‘really, really well’ and that she is desperate to cradle daughter Vanellope Hope in her arms for the first time since her operation during an interview with This Morning

Naomi Findlay, right, appeared on This Morning from Glenfield Hospital, Leicester earlier this week

Naomi Findlay, right, appeared on This Morning from Glenfield Hospital, Leicester earlier this week

Frances Bu¿Lock, the consultant paediatric cardiologist at Glenfield Hospital, Leicester, said she described the chances of the baby surviving as 'remote'

Frances Bu’Lock, the consultant paediatric cardiologist at Glenfield Hospital, Leicester, said she described the chances of the baby surviving as ‘remote’

Vanellope is recovering from three extraordinary operations to relocate her heart from outside her chest to inside her body.

Her condition, ectopia cordis, was discovered during a scan at nine weeks into pregnancy.

WHAT IS ECTOPIA CORDIS?

Pentalogy of Cantrell is a rare disorder that is present at birth. 

It is characterized by a combination of birth defects that can involve the breastbone, the sternum, the diaphragm, the thin membrane that lines the heart, the abdominal wall, and the heart.

Pentalogy of Cantrell occurs with varying degrees of severity. Some infants may have mild defects, while others may have serious, life-threatening complications.

The most severe expression of Pentalogy of Cantrell occurs when the heart is completely or partially displaced outside the chest, which is known as ectopia cordis.

Infants with Pentalogy of Cantrell can have a wide variety of congenital heart defects including a ‘hole in the heart’ and abnormal location of the heart on the right side of chest instead of the left, among others.

The exact cause of Pentalogy of Cantrell is unknown. Most cases occur randomly for no apparent reason.

One theory suggests that the symptoms of Pentalogy of Cantrell occur due to an abnormality in the development of embryonic tissue early in the pregnancy.

The condition affects boys and girls in equal numbers. The exact prevalence is unknown, but estimated to be 5.5 in one million live births.

Source: National Organization For Rare Diseases 

Mr Wilkins 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, potential damage to her heart and circulation, and was unlikely to even survive until birth.

But hope began to return when Frances Bu’Lock, consultant paediatric cardiologist at Glenfield, conducted further scans at 13 and 16 weeks and discovered that – apart from her heart being in the wrong place – Vanellope ‘appeared essentially normal’.

Mr Wilkins, 43, said: ‘When she starts moving her arms, you feel like, ‘That’s a life in there, she is there’.’

Undeterred in their fight for their baby, 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.’

When she was 35½ weeks’ pregnant, at 9am on November 22, Miss Findlay was wheeled into a cardiac theatre at Glenfield Hospital.

She met the 50 doctors, midwives and nurses who were split into four teams to deliver the baby, keep the mother safe and carry out the complex heart surgery.

At 9:50am, baby Vanellope was born. 

The scan showed the baby¿s heart and part of her stomach were growing outside of her body

The scan showed the baby’s heart and part of her stomach were growing outside of her body

Dean, who works as a builder, said: 'We still didn¿t know what we were looking at when we saw the scan, it looked like a little hamster with a hat on'

Dean, who works as a builder, said: ‘We still didn’t know what we were looking at when we saw the scan, it looked like a little hamster with a hat on’

Speaking on This Morning, Miss Findlay said: ‘Everyone including me and my partner were actually holding our breath. 

‘We were told the first 10 minutes of her life were really crucial to see how she was going to react in our environment rather than in my womb.

‘And to hear her come out and cry, which is one of the things they said they might need to help her to do, to see her come out actually kicking and screaming was an absolute miracle. And to be able to witness that was even more touching.’

The focus now is on keeping Vanellope stable and infection free in hospital before the team decide on the next step for the infant.  



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