Imogen's double lung transplant

Imogen was only five months old when she had a double lung transplant at Great Ormond Street Hospital (GOSH), making her the smallest child to ever have the operation in the UK.

Now, Imogen is able to enjoy most activities like any other little girl her age. Here’s her story...

Imogen was born a seemingly healthy baby, but at only a few weeks old she started to show signs of ill health. She was initially hospitalised after contracting a respiratory infection, and then continued to be in and out of hospital as her breathing problems persisted. Suddenly her condition deteriorated and she went into respiratory arrest, requiring emergency treatment.

After a series of tests and scans she was diagnosed with Alveolar Capillary Dysplasia (ACD), a very rare lung condition with only a small number of cases known worldwide. It was a massive shock to Imogen’s family. “We were told how babies with the condition usually only survive a few weeks after they are born,” explains mum Hayley.

“The diagnosis was a huge shock and difficult to take in.”

The family met with GOSH paediatric respiratory consultant Dr Helen Spencer who explained Imogen’s options. The only possible treatment for ACD is a lung transplant, but due to Imogen’s young age and small size, it was uncertain whether she would be able to have the operation.

Dr Spencer explained how lung transplant surgery had never been performed on a child so small in the UK, and how the likelihood of finding a donor match was extremely low.

However, the decision was made by the clinical team at GOSH and Imogen’s family to put her on the waiting list for a new pair of lungs.

“It all happened so suddenly,” says Hayley. “We knew most children needing organ transplants spend weeks and months waiting, and some never get the call.”

After only one week of waiting, the call came through that a match had been found, and Imogen would have her operation at GOSH.

After anxiously waiting during the seven-hour operation, the family received the news that it had been a success.

“It was a huge relief to see things heading in the right direction,” explains Hayley. “The difference was amazing, and a few weeks after the transplant Imogen was back to her usual chirpy self.”

After several months in hospital, Imogen is back home and doing well. Although the family have to be careful with germs due to her weakened immune system, Imogen is able to enjoy most activities like any little girl her age.

Hayley, and Imogen's dad, Jason, often think about the donor family. Hayley says: “We will be eternally grateful to them for making the decision to donate at such a difficult time.

“Without their gift, our baby wouldn’t be here, and my children wouldn’t have their baby sister.

“Imogen just shows how organ donation can change lives and signing up to the register can make all the difference.”

Last year alone, 15 children across the UK died while waiting on the list for a suitable organ donor. To join the NHS Organ Donor Register visit organdonation.nhs.uk or call 0300 123 2323. Tell your family you want to donate too.