An 11-year-old girl from Bolton is supporting Organ Donation Week by sharing her experience of receiving a life-saving heart transplant after developing a rare and serious heart condition.
Until last spring, Scarlett Icke was a healthy and active child with no history of heart problems. However, after several weeks of persistent sickness and vomiting, her health began to deteriorate.
Initially thought to be a gastrointestinal illness, Scarlett’s symptoms continued and she became increasingly lethargic. She was admitted to her local hospital, where an echocardiogram revealed she had dilated cardiomyopathy, a condition in which the heart muscle becomes enlarged and weakened, reducing its ability to pump blood effectively around the body.
She was urgently transferred to the Freeman Hospital in Newcastle and placed on the super urgent heart transplant waiting list.
As her condition worsened, Scarlett was supported on extracorporeal membrane oxygenation (ECMO), a form of advanced life support that temporarily takes over the work of the heart and lungs, maintaining circulation and oxygen levels while a patient awaits further treatment.
Scarlett remained on ECMO for 19 days. During that time, her clinical team was preparing to move her onto a left ventricular assist device (LVAD), a mechanical pump that helps the heart circulate blood around the body and can be used to support patients while they wait for a heart transplant.
However, on the nineteenth day, a suitable donor heart became available and Scarlett underwent transplant surgery the same day.
Because she was able to receive an adult donor heart, clinicians had access to a wider pool of potential donors, helping increase the chances of finding a suitable match.
Today, Scarlett has returned to many of the activities she enjoyed before becoming ill and is getting back to being a typical 11-year-old.
Her mother, Hannah, said their family’s experience had transformed their understanding of organ donation.
“Before Scarlett became unwell, organ donation wasn’t something we had really thought about or spoken about as a family,” she said.
“Going through this experience has shown us just how important it is. We saw first-hand how many people are waiting for a transplant and that not everyone receives the organ they need in time.
“We will always be grateful to Scarlett’s donor and their family. At a time of immense loss for them, they made a decision that saved our daughter’s life.”
Hannah also paid tribute to the staff who cared for Scarlett during her time at the Freeman Hospital.
“Everything happened so quickly. Scarlett went from being a healthy, active child to needing specialist care almost overnight.
“She was frightened and faced many weeks in hospital away from home, but the staff were incredible. The nurses, doctors and wider teams supported not only Scarlett but our whole family throughout her treatment.”
Barbara Cardoso, paediatric cardiology consultant and transplant physician at Newcastle Hospitals, said: “As transplant physicians, we see first-hand the extraordinary difference that organ donation makes to children waiting for a heart transplant.
“When Scarlett became critically ill, she was fortunate to receive a transplant quickly thanks to the gift of an adult donor heart. Her story is a powerful reminder of the generosity of donor families, whose legacy lives on through the lives they save.
“Sadly, many children are not as fortunate and face increasingly long waits for a suitable donor heart, with organs for young children remaining desperately scarce. Scarlett’s journey highlights both the life-changing impact of organ donation and the importance of continuing to raise awareness and encourage conversations about donation. For children awaiting a transplant, the gift of a donor organ can mean the difference between life and death.”
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, said: “We are facing one of the most challenging periods for organ donation in over a decade. The sharp decline in donors and the rising number of people waiting for a transplant need urgent action. We have already adapted significantly to changes in the donation environment. But. Saving lives and reducing the waiting list needs collective effort across the NHS and society.
“There is a simple action the public can take to help save lives. Please sign the NHS Organ Donor Register. Most of us would accept an organ if we needed one but opportunities to save lives are being lost because families didn’t know what their loved ones wanted. Leave them certain.
“It takes two minutes to confirm an organ donation decision on the NHS Organ Donor Register. Each donor can potentially save up to nine lives. Visit organdonation.nhs.uk, call 0300 123 23, or use the NHS App.”
Organ Donation Week is taking place from 21 to 27 September and raises awareness of the importance of organ donation and the conversations families should have about their wishes.
Thousands of people across the UK are currently waiting for a life-saving transplant. Scarlett hopes that by sharing her experience, more people will consider discussing organ donation with their loved ones and making their decision known.
Scarlett’s family hopes that sharing her story will encourage more people to have conversations about organ donation and the difference it can make to patients and families facing life-threatening illness.
