Kidney patient Jake Morgan has moved into family accommodation, taking him one step closer to going home after his transplant operation at Great Ormond Street Hospital (GOSH).
The Independent’s Give To GOSH appeal has been following the four-year-old since November. We have seen him go through his transplant and last month heard how Jake spent Christmas Day on Eagle Ward, following his surgery. Speaking then, he said he was “wobbly” as his mother, Samantha, described her anguish when he woke in pain, calling “mummy, mummy, mummy” and she tried to distract him with presents.
Now, though, Jake and his family have moved into charity-funded family accommodation near the hospital to prepare for the eventual move home to Barnet in north London. Samantha said the news was “amazing” and “totally unexpected” as Jake had a rocky period between Christmas and New Year when doctors performed a biopsy on his new kidney amid fears it may have been facing rejection.
Samantha said: “It has been a bit of a nightmare since Christmas so the news we could leave hospital was an amazing surprise. Jake clapped his hands together and he’s been singing today since they told him. I hope it all stays positive.”
Jake needed a transplant because he was suffering from severe irreversible kidney failure and his kidney function was worsening to the point that he would need dialysis. To avoid this and its complications, a pre-emptive transplant was performed.
But the biopsy results showed no sign of rejection and Jake was well enough to be discharged from Eagle Ward and move to patient accommodation near the hospital.
Jake’s doctor, Stephen Marks, clinical lead for kidney transplantation at GOSH, said: “Jake had a kidney transplant biopsy on New Year’s Day as his blood tests had shown a deterioration in his kidney function.
“However, his kidney transplant biopsy was normal, without signs of rejection, and his kidney transplant function continues to improve every day, although not yet back to his baseline. He is continuing to make excellent progress. Although he still requires close monitoring, he is well enough to be discharged to our patient hotel.”
The family moved into the accommodation on Monday night. It is funded by GOSH’s charitable arm to allow families to regain their independence and adjust to life outside of hospital, while remaining close to expert medical care. Earlier in his stay, Jake also received help from the charity in the form of time with a play specialist, Lynsey Steele. She continues to support Jake after helping him to get over his fears before his surgery.
Meet the patients and doctors of GOSH
Meet the patients and doctors of GOSH
1/9 Elliott Livingstone
Two-year-old Elliott is a “cheeky” little boy who has a Thomas the Tank Engine sticker on his Berlin heart machine, which has kept him alive since his own heart failed eight months ago. Elliott has two tubes pumping blood around his tiny body. It keeps him alive but the machine has left him confined to the wards of Great Ormond Street Hospital until a new heart is found
2/9 Melissa Strickland
As the ward sister on Koala Ward, Melissa Strickland leads a nursing team with the challenging job of looking after children with craniofacial and neurological conditions. “You have to have all the skills and knowledge to do this job but personally for me you cannot do it unless you have passion but also compassion,” she said. “You don’t get used to the sad side of things but you do learn to manage it.”
3/9 Amy Willis
Amy Willis carries a discreet black medical bag everywhere she goes. It contains the cutting-edge HeartWare device that is keeping her alive. A smaller, more advanced version of the Berlin artificial heart, it was fitted in April after she was emergency airlifted to GOSH from Alder Hey hospital in Liverpool. The device means that 14-year-old Amy can be home in Flintshire this Christmas while remaining on the heart transplant waiting list. She is doing well but 15 per cent of patients with a HeartWare device or Berlin heart die while waiting for a new heart, so money raised by the appeal will also go to help researchers identify ways to keep children alive while they await transplant
4/9 Myra Bluebond-Langner
Professor Myra Bluebond-Langner represents the vital work of the Louis Dundas Centre for Children’s Palliative Care, GOSH’s world-class centre dedicated to research and care for children with life-limiting illnesses. The LDC is named in honour of Louis Dundas, a four-year-old boy who died in “unspeakable pain” after suffering a brain tumour in April 2008. Its aim is to ensure that no child suffers unnecessarily in their final days. Money raised from The Independent’s Give to GOSH appeal will go to fund the team’s work to manage pain, and also fund vital research into palliative care in children across the whole of the UK. Professor Bluebond-Langner, who heads the research, said: “Paediatric palliative care is a relatively new field where practice has outstripped research. We look to change that.”
5/9 Finella Craig
Together with with Professor Myra Bluebond-Langner, Dr Finella Craig represents the vital work of the Louis Dundas Centre for Children’s Palliative Care, GOSH’s world-class centre dedicated to research and care for children with life-limiting illnesses. The LDC is named in honour of Louis Dundas, a four-year-old boy who died in “unspeakable pain” after suffering a brain tumour in April 2008. Its aim is to ensure that no child suffers unnecessarily in their final days. “One of the worst experiences for a family is to witness their child in pain and discomfort, and for them to feel totally powerless to do anything about it,” said Dr Craig, a consultant in paediatric palliative medicine at GOSH since 2002. Money raised from The Independent’s Give to GOSH appeal will go to fund the team’s work to manage pain, and also fund vital research into palliative care in children across the whole of the UK.
6/9 Rowan Pethard
Like most little boys, Rowan Pethard loves playing football. At the start of 2015 the seven-year-old Spurs fan baffled his doctors in Hemel Hempstead with a string of coughs, colds, tummy bugs, aches, pains and rashes. It wasn’t until quite late on that doctors discovered he had leukaemia. He spent two days in intensive care while he had emergency chemo. He has two years of follow-up treatment ahead. “He’s amazing, a little superhero,” his mum said. “It makes it easier for his father and I and his brother to cope.”
7/9 Martin Elliott
Paediatric heart and lung surgeon Martin Elliott, 64, is one of the longest serving doctors at GOSH, leading groundbreaking research and treating thousands of patients over the past 30 years. His work has bridged the gap between surgery and research with skills ranging from heart-bypass surgery to correcting congenital lung disorders.
8/9 Ralph Frost
For Ralph the hardest thing about having to live at GOSH while he waits for a new kidney isn’t missing his toys. He has plenty of those and can terrorise the nurses by pushing his little red motorbike down the corridors of Eagle Ward. The hardest thing for the six-year-old is battling not to cry out during his nightly dialysis sessions. “It really hurts,” he said. “But the other kids are sleeping and I don’t want to wake them up.” Ralph suffers from nephrotic syndrome and is currently waiting for a kidney from his father, Nick. He’s called the kidney “Chase” and his parents, who have been trained to operate his dialysis machine, hope to be home by Christmas
9/9 Lynsey Steele
The strongest praise for Lynsey Steele, 33, comes from the parents of the children she helps. “The children here wouldn’t get by without Lynsey,” said Ralph’s mother Amie Frost. “If she wasn’t here then we’d have cracked up.” Lynsey’s role, which is funded by the Great Ormond Street Hospital Children’s Charity and will be supported by The Independent’s Give to GOSH appeal, is to help children play and relax, but also to have the difficult conversations explaining their treatment
At Christmas, his mother spoke of her desire for “normality” and for him to be able to do simple things such as “sit on the floor” in the family’s front room, not just in a hospital bed.
Small steps like this are huge for Jake, and earlier this week he was able to wear clothes, not pyjamas, for the first time since his operation.
“Until now we had been spending a couple of hours each day over at the flat, but Jake never wanted to go back to hospital, which was really hard. It is our home now for the moment,” added Samantha.
Arsenal and England striker Theo Walcott has become the latest star to endorse The Independent’s Give to GOSH appeal.
The footballer used a visit to the hospital to praise the “amazing” children who have “been through so much” but still have “incredible determination”.
Walcott, who has been supporting the hospital for six years, said that he had already seen how donations were “transforming “ the hospital and urged readers to support The Independent’s appeal.
If you Give to GOSH, your donation will be matched by the Government, doubling its amount. To donate go to: http://ind.pn/1Mydxqt