A five-year-old Catterick Garrison boy is back home after a life-saving double lung transplant.
Joseph Nicholson spent nine months between the Freeman and Great North Children’s Hospitals.
Until last summer, Joseph was an healthy little boy with a passion for his toy trains.
However after developing what initially appeared to be a mild pneumonia, his condition deteriorated rapidly and progressed to profound lung failure.
After receiving aggressive and extensive treatment over several months, his clinical team and family were faced with a critical dilemma – either Joseph received an urgent lung transplant or died from his condition.
In order to support and keep Joseph alive while he waited for a potential donor, doctors used a specially configured ECMO arrangement which, essentially, kept him continuously on a heart-lung bypass machine.
ECMO – or Extra Corporeal Membrane Oxygenation – uses a pump to circulate blood through an artificial lung that oxygenates the blood and while it is used by a handful of centres in the UK for babies and children with severe heart or lung failure, it is much less common to be used as a bridge to lung transplantation.
As this approach had not been successfully tried before in the UK, doctors at the Freeman and the RVI collaborated with colleagues from the United States to support Joseph and after a number of weeks, he successfully underwent his transplant, receiving his new lungs from a donor in Europe.
Now, after spending Christmas and his fifth birthday in hospital, Joseph is ready to embark on the next stage of what his consultant paediatric respiratory physician Matthew Thomas describes as a “phenomenal journey” and return home to Catterick.
He said: “This was an extremely unique and rare set of circumstances from day one – Joseph walked into hospital with what appeared to be a chest infection, now he’s leaving nine months later with a new set of lungs. It’s phenomenal he’s alive.
“It was not without risks and there have been some ups and downs but we knew it merited an attempt to try and do this for Joseph – and his family – and the ECMO provided a way – a bridge – to get him to lung transplantation, when previously he would not have survived.
“We knew this had never been successfully used as an approach in the UK but having sought advice from centres in the US – and with the skill and expertise of the teams at Great North Children’s Hospital and the Freeman – we were in a position where we could support him and give him the best chance until he could get a transplant.
“Several weeks later, thanks to an incredible piece of multinational co-ordination from a donor in Europe, the team performed a successful bilateral lung transplant.
“This really just highlights what we can achieve when we work collaboratively.”
With the country in lockdown due to the coronavirus pandemic, Joseph, who is still on ventilation and has a tracheostomy, will have to isolate at home with mum and dad, Fiona and Gary, although he will also be joined by his younger brother, Henry, who has been staying with his grandparents.
Both parents have literally uprooted from their home to be with their son, dividing their time between hospital wards and Crawford House and Scott House, which provides accommodation for families of sick children at both the RVI and Freeman Hospitals.
Fiona said: “It’s been a rollercoaster of a journey and throughout we’ve tried really hard not to think past the next day. We didn’t want to panic and think about worst case scenarios – every time we spoke to the doctors we focused on what was the next step to getting Joseph better and we took every little obstacle and every success as it came.
“The week before he went to hospital we had been on holiday at the seaside and while Joseph was a little under the weather, we thought he was coming down with a cold. We could never have imagined that within a month we were told he needed a lung transplant – it’s so cruel, your worst nightmare.
“But Joseph has been absolutely amazing throughout – he is autistic which in some ways has made the situation a bit easier as he is very accepting of what mummy and daddy tell him – and has just got on and coped with things.
“He’s doing really well – he can get out of bed himself, he can walk around and he plays with his trains. He might need another operation at a later date on his diaphragm but he’s getting stronger all the time.
“Saying that we couldn’t escape the irony that the first time we were told we could take our son out of hospital since his transplant was the weekend before we went into lockdown!”
The family also wanted to share Joseph’s story as an opportunity to raise awareness about organ donation, especially in children.
“We had never realised a donor could come from Europe, nor that it could be several months before a suitable donor was found but we were lucky and will always be thankful – it was a miracle really,” added Fiona.
“We would really like to say thank you to Matt, Malcolm Brodlie (consultant paediatric respiratory physician) and all the team and surgeons at Newcastle Hospitals – they have been absolutely wonderful and are our heroes.” [kofi]