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Boy, 3, is fighting fit after he is kept alive a record 251 days with artificial heart
'None of it would have
been possible without the selfless generosity of the donor family', says mother
09:07 GMT, 11 April 2012
A three-year-old boy has been kept alive with an artificial heart for 251 days – longer than any other child in the UK.
Joe Skerratt underwent a successful heart transplant at Great Ormond Street Hospital last year and is now the picture of health.
But it was touch and go for the youngster who was diagnosed with dilated cardiomyopathy (DCM) soon after birth and suffered three cardiac arrests 15 months ago.
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Mighty Joe Young: The three-year-old finally received a new heart after an nine-month wait
The condition, which causes the left and also sometimes the right hand side of the heart to stretch, left Joe’s heart muscle weak and unable to pump blood efficiently around his body.
Joe spent nine months in hospital attached to a device called the ‘Berlin heart’, a 15kg machine the size of a small chest freezer, which supports the work of the heart and acts as a life-saving bridging device for children awaiting a transplant.
But then his parents Mark and Rachel faced an agonising and record-breaking wait for a donor organ.
'When Joe passed the 200 day mark on the
Berlin heart we started to really question what else could be done if a
heart wasn’t found, but we knew deep down there wouldn’t be much,' Mrs Skerratt said.
'On day 251 the call we had been waiting for came. We were offered a heart for Joe.'
Mrs Skerratt, from Gillingham, said: 'Seeing his new heart – a normal size
and thumping away in his chest, was incredible. None of it would have
been possible without the selfless generosity of the donor family.
'We cannot imagine what they went through.'
Joe was diagnosed with dilated cardiomyopathy. Later doctors said this was caused by genetic disorder known as Barth Syndrome
Thankfully, the operation was a success
and after recovering in hospital Joe was treated to a pizza dinner on
his first night home.
Joe's consultant Dr Alessandro Giardini, consultant pediatric cardiologist at GOSH said: 'We are really delighted to see Joe doing so well and thriving at home. He spent a long time with us in hospital.
'Joe was very lucky to be able to have a heart transplant. There is a chronic shortage of donor organs for children in the UK and at any one time we have several children in the hospital awaiting a transplant. Lots of children wait years for an organ to become available and can very sadly die while they are doing so.'
Joe's parents first realised there was something wrong when he was three-weeks-old and Rachel had woken to find him 'grey'.
He was rushed to the Evelina Children’s Hospital where an x-ray showed his heart was severely enlarged. Doctors diagnosed him with dilated cardiomyopathy (DCM).
He returned home and his condition was at first managed through a combination of drugs and a strict diet. However, his health deteriorated rapidly in December 2009 and he spent time on intensive care. Fearing the worst, Rachel and Mark had him christened.
Joe fought back from having three cardiac arrests in December 2010
Joe rallied, and was later diagnosed with Barth syndrome, a condition linked to the x gene which causes muscle weakness, short stature and feeding problems.
He spent the next year in generally good health with Rachel describing him as a ‘happy little monster’.
However, by December 2010 Joe began showing signs of heart failure. Doctors confirmed his heart valves were leaking. Joe was short of breath, puffy in the face and had lost his usually healthy appetite.
Flying high: Joe has a hopeful future
An ECHO scan showed that Joe’s heart had become further enlarged and was now taking up too much space in his chest cavity. Rachel and Mark were told he would need a transplant and he was placed on the waiting list.
A few days later, Joe had a rapid decline in health and had two cardiac arrests in hospital. Rachel was told the best chance of stabilising Joe would be to transfer him to GOSH and put him onto an Extra-Corporeal Membrane Oxygenation (ECMO) machine. The ECMO could temporarily do the work of his heart and lungs to give them a rest.
Within half an hour Joe arrived at GOSH, where he suffered another cardiac arrest. Doctors were able to resuscitate him for a third time and he was placed onto the ECMO machine. Then 36 hours later, Joe was stable enough to be attached to a Berlin heart.
Rachel explains: 'Joe went through so much in such a short space of time, but once he was on the Berlin heart we started to see his character coming back.
'We took things one day at a time, while we waited for a heart to become available. We tried to plan as many ‘everyday’ activities for Joe as we could, Dr Giardini nicknamed him ‘The Swiss Watch’ because he likes to do everything with precision timing!'
'In total we spent 322 days in hospital before returning home.'
Mrs Skerratt added: 'Organ donation is a topic everyone
should discuss. It is not just those with conditions present from birth
who end up needing transplants. Some children, like Joe, will become
very sick, very quickly.'
To join the NHS Organ Donor Register, call the Organ Donor Register line on 0300 123 23 23, or log onto the website: www.organdonation.nhs.uk, or text the word 'SAVE' to 84118