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The father of a baby girl from Esher desperately in need of a heart transplant is urging people to sign up to the organ donation register. A gravely ill baby has become the youngest heart patient in Britain to be fitted with a mini-defibrillator inside her chest as doctors battle to save her life.
Carina Marcangelo, who celebrated her first birthday yesterday (Wednesday, February 13), was diagnosed with cardiomyopathy in July last year and is currently on a life support machine and completely sedated after taking a turn for the worse on Saturday. Carina Marcangelo has cardiomyopathy, a disease that damages the heart.
Cardiomyopathy is a disease that damages the heart and, in Carina’s case, means her left ventricle has a thickened wall which stops the heart working as well as it should. She is on a life support machine and the waiting list for a heart transplant. She spent her first birthday yesterday under complete sedation at Royal Brompton Hospital in London.
After collapsing at home on October 14, Carina was rushed to Evelina Children’s Hospital, London, until a bed became available at the Royal Brompton, where she has remained for the past four months. In Carina's case, her cardiomyopathy means her left ventricle has a thickened wall which stops the heart working as well as it should.
In November, Carina was fitted with an implantable cardioverter-defibrillator (ICD) that gives a shock if her heart goes into a dangerous rhythm. She is the youngest child to have had an ICD fitted. She was diagnosed with cardiomyopathy in July last year and is currently on a life support machine and completely sedated, after taking a turn for the worse on Saturday.
Carina was put on the transplant list on the day of her surgery and is on the urgent list when she is on life support. As soon as she comes off life support, she goes back on to the active list, falling down the list. The defibrillator device gives a shock if her heart goes into a dangerous rhythm. She became the youngest child to have had an ICD (as they are known) fitted in November when she was just nine months old.
Darren Marcangelo, 40, of Milbourne Lane, said: “She had a bad turn on Saturday morning but the good news is she is now on the urgent list again. After taking ill at home on October 14, Carina was rushed to Evelina Children's Hospital, London, until a bed became available at the Royal Brompton, where she has remained for the past four months.
“They can’t give you any idea of time other than average waiting times, which is about three months. Now we have been waiting three months and nothing has come up yet.” Carina was put on the transplant list on the day of her surgery and is on the urgent list when she is on life support. As soon as she comes off life support, she goes back on to the active list, falling down the list.
Carina could only receive a heart from a one-year-old to a small five-year-old so the size is correct. Her father Darren Marcangelo, 40, from Esher, Surrey, said: 'She had a bad turn on Saturday morning but the good news is she is now on the urgent list again.
Mr Marcangelo said: “At the moment they are trying to keep her as stable as possible and cool her temperature right down. We don’t know how long she will be on life support for. It could be until a heart becomes available. She is in such a fragile state at the moment.” 'They can't give you any idea of time other than average waiting times, which is about three months. Now we have been waiting three months and nothing has come up yet.'
Mr Marcangelo is urging people to sign up to the organ donation register so that others, like Carina, are given a chance at life. To get a heart that is the correct size, Carina can only receive a heart from a one-year-old to a small five-year-old.
He said: “If it’s something you agree with you should sign up, but most importantly make sure your loved ones know your wishes because it is the next of kin who will have to make those decisions. Mr Marcangelo said: 'At the moment they are trying to keep her as stable as possible and cool her temperature right down.
“It is very difficult for parents to make that decision about their child, but you have to consider it because what if something happens to them.” 'We don't know how long she will be on life support for. It could be until a heart becomes available. She is in such a fragile state at the moment.'
Mr Marcangelo has also signed an e-petition urging the Government to create an opt-out organ donation system, with everyone automatically on the register unless they ask for their name to be withdrawn. He is urging people to sign up to the organ donation register so that others, like Carina, are given a chance at life.
He said: 'If it's something you agree with you should sign up, but most importantly make sure your loved ones know your wishes because it is the next of kin who will have to make those decisions.
'It is very difficult for parents to make that decision about their child, but you have to consider it because what if something happens to them.'
Mr Marcangelo has also signed an e-petition urging the Government to create an opt-out organ donation system, with everyone automatically on the register unless they ask for their name to be withdrawn.
The Marcangelo family have been told several times they might lose Carina and are hoping the hospital can keep her stable. The Marcangelo family have been told several times they might lose Carina and are hoping the hospital can keep her stable.
Mr Marcangelo said: “Carina is strong and the doctors have been amazed at how much of a fighter she is.” Mr Marcangelo said: 'Carina is strong and the doctors have been amazed at how much of a fighter she is.'
The last resort for Carina is an ECMO, which acts as an external heart bypass, which begins to limit the possibility of having a transplant. The last resort for Carina is an ECMO, which acts as an external heart bypass, which begins to limit the possibility of having a transplant.
The Marcangelo’s also have another daughter, Emily, four, who has adapted to life at the hospital. The Marcangelo's also have another daughter, Emily, four, who has adapted to life at the hospital.
Mr Marcangelo and his wife, Nicole, explained to her about the ICD and said she understood what she was told. Mr Marcangelo and his wife, Nicole, explained to her about the ICD and said she understood what she was told.
Speaking of the Royal Brompton Hospital, Mr Marcangelo said: “It is an amazing hospital and the staff and the whole team become your family. They are such a supportive network. Speaking of the Royal Brompton Hospital, Mr Marcangelo said: "It is an amazing hospital and the staff and the whole team become your family. They are such a supportive network.
“My wife and I want to say a really big thank you because without the staff we would have had a complete breakdown. We’ve had to keep strong of the sake of our daughters. 'My wife and I want to say a really big thank you because without the staff we would have had a complete breakdown. We've had to keep strong of the sake of our daughters.
“We have got everything crossed for a happy ending.”'We have got everything crossed for a happy ending.'
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