Youngest Surviving Heart Transplant Patient In The UK

February 23, 2009 at 11:00 am Leave a comment


Sarah Cox had a heart transplant at the age of 23 days – making her the youngest surviving heart transplant patient in the UK (by age at transplant).




Sarah is one of the youngest people ever to undergo a heart transplant in the UK, and is now a delightful and cheeky little girl who lives life to the full.




Her mother, Jennie Cox said: “Sarah was four weeks premature, so technically she had a transplant before she was even due to be born.”




Her father, Nigel Cox, said: “Sarah has not just had the gift of life…she has had the gift of a normal life. Most of the time, unless we’re with family and friends, we need not even discuss her medical condition.”




Although not keen for the limelight, Jennie and Nigel have gone public to encourage families to join the NHS Donor Register. They said: “We’re aware of the heartbreak the donor family went through. They lost a child. Without their courage and selflessness, our daughter would not be alive. We urge people to think about becoming donors, and what they would do if a tragedy hit their children.”




Dr Mike Burch, Director of Cardiothoracic Transplantation at Great Ormond Street Hospital said: “Being so young Sarah was an unusual transplant case for us at GOSH, as donated organs for children of her age are very rare. Sarah is now thriving, and as a team we are delighted with the progress she has made.




“A heart transplant didn’t just give Sarah a chance of life, it gave her a chance to lead a very good quality of life, and there is no reason why she can’t go on to live a full and active childhood just like her friends.”



Sarah’s story




Sarah was born healthy, if slightly early. At the age of six days she contracted viral meningitis, and spent a week in her local hospital, however the enterovirus affected her heart. Sarah was rushed to Great Ormond Street Hospital’s Neonatal Intensive Care Unit (NICU) by the specialist CATS (Children’s Acute Transportation Service), and then to the Cardiac Intensive Care Unit (CICU).




At first it was thought she would be placed on ECMO – a heart and lung machine – to see if her heart recovered. She got better, but then suddenly around three weeks, she deteriorated. The virus had destroyed parts of her heart and there was little chance of recovery.




Jennie said: “With Sarah aged just 21 days, we were told it might be 12-48 hours before she left us. We had her baptised and then tried to start saying goodbye.”




Then came the surprising news that a heart had become available, via a European hospital. An intensive care consultant called Jennie and Nigel in, and told them “Actually, a heart transplant is a possibility as we have been offered a compatible heart.”




Nigel said “I think I stopped breathing at that point. I could not take it what I had heard as I believed there was no hope. We knew nothing about transplants. The nurse specialist sat us down and gave us the two hour basic briefing we needed.”




They said yes to the transplant. The operation took place on Sarah’s 23rd day. Just over three weeks later, she was home and has since been active and well.




Jennie said “The press imply a heart transplant is a cure…it’s not a cure. Sarah will have to take anti-rejection drugs for the rest of her life, but she has a good quality of life, and hopefully many years of it.”




Sarah was lucky, partly because it is not currently possible for organs to be donated from children under two months of age in the UK. In Sarah’s case, her heart came from an overseas donor.




Jennie concluded: “We understand Sarah was extremely lucky. We would welcome more discussion of the UK rules and codes of practice regarding organ donation and the very young.”




To join the NHS Organ Donor Register: call the Organ Donor Register line on 0845 60 60 400, or log onto the website: http://www.organdonation.nhs.uk or text the word ‘GIVE’ to 84118. Standard text rates apply.



Notes




1. All media enquiries are to come through Great Ormond Street Hospital press office.




2. Sarah is the youngest surviving heart transplant patient in the UK going by age at transplant.




3. Great Ormond Street Hospital is the largest heart and lung transplant unit for children in the UK




4. In October 2008 a UK code of practice for the diagnosis and confirmation of death, produced by the Academy of Medical Royal Colleges, cited that for infants aged between 37 weeks gestation and 2 months it is rarely possible to confidently diagnose brain-stem death (the medical definition of death).




5. Britain’s youngest ever heart transplant patient, a patient of Sir Magdi Yacoub, sadly died in his late teens.




6. We request that the media do not print or speculate about the date of transplant or the country of origin of the heart, as this violates the privacy and dignity of the donor family, and could jeopardise future attempts to get consent to donate. Any media speculation about the country of origin of the heart has not been confirmed by the hospital.




7. Great Ormond Street Hospital for Children NHS Trust is the country’s leading centre for treating sick children, with the widest range of specialists under one roof. With the UCL Institute of Child Health, we are the largest centre for paediatric research outside the US and play a key role in training children’s health specialists for the future. Our charity needs to raise £50 million every year to help rebuild and refurbish Great Ormond Street Hospital, buy vital equipment and fund pioneering research. With your help we provide world class care to our very ill children and their families.



Great Ormond Street Hospital for Children NHS Trust


London


England

http://www.ich.ucl.ac.uk

[Via http://www.medicalnewstoday.com]

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