Daily Mirror (Northern Ireland)
OUR MIRACLE29
Joseph, 5, home with mum & dad after pioneering care..and double lung transplant
to continue his “phenomenal journey”, according to paediatric respiratory physician Matthew Thomas.
And yesterday Fiona and accountant Gary, both 35, enjoyed their first full day at home with Joseph, who is autistic, and his little brother, Henry.
“We want to thank the hospital staff for everything,” they said.
“All the team, Matt, [Dr] Malcolm Brodlie and surgeons – they have been absolutely wonderful, and are our heroes.”.”
Until last summer, Joseph was a healthy boy who loved toy trains.
After developing what appeared to be mild pneumonia, he deteriorated rapidly and progressed to profound lung failure. Following aggressive and extensive treatment, it became clear Joseph would die without a lung transplant.
ECMO is used at a handful of centres to care for babies and children suffering severe heart or respiratory failure.
But it is rarely used as a bridge to lung transplantation, and the approach had not been successfully tried in the UK.
Joseph’s story comes days before Mirror-backed Max and Keira’s law on organ donation comes into force.
It means from May 20, all adults in England will be assumed to be donors when they die, unless they opt out. And Joseph’s parents want to raise awareness about donation, especially in children.
Fiona said: “We never realised it could be months before a suitable donor was found but we were lucky and will always be thankful. It was a miracle, really.”
With the country in lockdown, Joseph, who is still on ventilation and has a tracheostomy, will isolate at home.
Both parents divided their time between hospital wards and the Sick Children’s Trust, which provides accommodation for families of poorly children.
And they are proud of how their son has handled his ordeal.
Fiona said: “The week before he went to hospital we had been on holiday at the seaside. It’s so cruel.
“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.
“He’s doing really well. He can get out of bed himself, he can walk around and he plays with his trains. He is getting stronger all the time.”