BRITAIN’S youngest ever lung transplant patient is thriving nearly a decade later, defying the odds of doctors who feared she wouldn’t survive a year.
Imogen Bolton, now nine, was born with super-rare condition alveolar capillary dysplasia in 2016.
Imogen, pictured in August, manages to live a near-normal life after her transplant[/caption]
When Imogen was a baby, doctors feared she would not survive for longer than a year[/caption]
It meant the lining of her lungs was too thick so she could not absorb oxygen properly from the blood, and she was not expected to reach her first birthday.
Even when surgeons carried out a drastic op when she was just five months old, transplanting two tiny six-inch lungs from a donor, they had no idea if it would work.
But now Imogen is a fit and active schoolgirl who loves arts and crafts and riding her bike, and in August took part in the British Transplant Games for the sixth time.
The operation would have been a step into the unknown but Imogen has done phenomenally well
Dr Rossa Brugha
Mum Hayley, from Brighton, said: “Every milestone is massive because they are things we were told were never going to happen.
“When she was diagnosed, it made me realise how short life is.
“We were told palliative care was the only option and later in a taxi I saw a group of little children in high vis jackets on a school trip, and I thought Imogen would never have that.
“Dropping her off for her first day of school was a huge milestone, and I distinctly remember her getting on a horse for the first time.
“It has changed my parenting and you have to learn to live a new way because she will always need medication, but it has made me realise how precious life is.”
Imogen needs daily medicine to control her immune system, lowering it to prevent rejection of the transplant lungs but keeping it strong enough to fight off coughs and colds.
Imogen pictured with her family at the British Transplant Games[/caption]
Her life was saved with lungs donated from baby Theo Omondi who tragically died at just 41 days old.
At the time, Imogen was believed to be the youngest lung transplant recipient ever in Europe.
Theo’s parents said: “We greatly appreciate seeing updates like this one on Imogen, as these are milestones Theo’s donation has helped her reach.
“We cherish Theo’s gift of life to Imogen, knowing the gift of life is precious to give and to receive.”
Thousands on UK transplant waiting lists
Routine illnesses often require hospital visits but she can now live a mostly normal life and the lungs work as though they were her own.
More than 8,000 people are estimated to be on the NHS transplant waiting list, including children, and hundreds of people die every year waiting for an organ donor.
Imogen’s consultant, Dr Rossa Brugha at Great Ormond Street Hospital for Children, said: “Her lungs are tip-top, we now just manage all the other things that come with a transplant.
“I don’t think we would have expected her to get to her first birthday with that condition.
“The operation was complicated surgery and not all patients survive the transplant itself.
“It would have been very uncertain because it was a step into the unknown.
“Imogen has done phenomenally well and is living as close to a normal life as possible, it’s really amazing to see.
“Her story is so powerful and it is important to be able to have conversations about child organ donation.
“It is the worst thing on Earth for parents when something goes wrong but we can do amazing things now out of terrible situations.
“We meet families who have lost babies who find it a source of comfort later on down the line from the fact that some good can be brought from something terrible that happened to their family.”
HOW TO BECOME AN ORGAN DONOR
JUST over 4,500 people received an organ transplant in 2023 from 2,387 donors – but more than 400 people per year die waiting because there are not enough donors.
NHS Blood and Transplant says: “Only one per cent of people who die in the UK every year die in the right circumstances and in the right location to be eligible for their organs to be used to save someone’s life.
“That is why we need as large a pool of people as possible.”
The law has changed so all adults are “opt-out” organ donors, meaning hospitals can use their organs unless they told the NHS they did not want to be a donor, or their family says no after they die.
Six in 10 families refuse to let doctors use their loved one’s organs.
People who want their organs to be used to help others after they die can register online on this link.
Parents must give their consent for their child’s organs to be donated if the child dies.
Health chiefs have also added sign-up options to new passport and driving licence applications to try and boost numbers.