Youngest girl in UK to have lung transplant has first day at school

Four-year-old Imogen Bolton from Whitehawk, Brighton, was just five and a half months old when she underwent transplant surgery on her lungs due to a genetic condition known as Alveolar Capillary Dysplasia (ACD).

Imogen’s mother Hayley Bolton said: “Her lungs did not form properly while she was growing in me.

“The survival rate for children born with ACD is very minimal.

“At about 11 weeks Imogen became very poorly and she had to go in to the Royal Alex hospital in Brighton and then to the Evelina in London.

“After her diagnosis we were told to prepare for the worst and that she would probably not live to see her first birthday.

Imogen as a baby at Great Ormond Street Hospital in London

“It was awful but we fought very hard for her.”

Imogen was seen by doctors at Great Ormond Street Hospital and accepted on to the transplant list in 2016. Within a week Hayley received a call to say there was an organ donor match.

Hayley said: “It was mixed emotions as you're put in a position where another family has lost their child.

"There were no guarantees as the lung transplant operation had never been done on a child as small as Imogen.”

Four years on, Imogen is “living and loving life as much as any four-year-old” and had her first day of school on Monday, which was also the first day of Organ Donation Week 2020.

Hayley said: “A transplant is not a cure.

"Imogen has a limited life and how long that life is we don't know. 

"But we’re aware of how incredibly lucky we are to be in this position for her getting to her first day of school."

Imogen was the youngest child to receive a bilateral lung transplant in 2016

In May this year, a new law known as Max and Keira's law was passed in England which changed the organ donation system to one of deemed consent.

All adults in England are considered as having agreed to donate their own organs when they die, unless they have opted out or are in an exempt group.

The law does not apply to anyone under 18, and Hayley said organ donors for children are much less common.

She said: "Organ awareness is very important to us and it seems poignant that Imogen started school on the first day of Organ Donation Week.

“We know a certain amount about her donor Theo, who was 41 days old when he passed away. We are so, so grateful and thankful to his family and we celebrate Theo every year.

"They should be at the same point we are at in sending their child to school.

“Imogen is aware that she is very special and she has a guardian angel in the sky.”

The David Ashwell Foundation funds research into the rare condition Imogen suffers from, Alveolar Capillary Dysplasia (ACD). To donate, visit the Virgin Money Giving page.