Great Ormond Street Hospital urges public to sign up to organ donor register

A shortage of donors is leaving many of the country’s most seriously ill children waiting for organ transplants, which may not come in time to save them, warn consultants at Great Ormond Street Hospital (GOSH). This Organ Donation Week (5 -11 September) the world-leading children’s hospital is calling on members of the public to sign up to the NHS Organ Donor Register to help save more young lives.

GOSH is a national transplant centre, with a leading role in providing paediatric transplant care for the children who need it, from across the UK. It is one of the largest children’s heart and lung transplant centres in Europe and is the largest paediatric centre for kidney transplant in the UK.

Dr Joe Brierley, GOSH Clinical Lead for Organ Donation, said: “Medical advances in the last decades mean many of our young patients are able to survive for longer while waiting for the donor organ they desperately need. However, this increased demand is not being met and sadly last year 15 children across the UK died while waiting on the list for a suitable donor organ.

“It’s vital that everyone considers signing up to the register; depending on the circumstances, children can receive donated organs from adults as well as from children. It really doesn’t take long to sign up, so we are urging people of all ages to do this as soon as possible, and to discuss donation decisions as a family.”

Sanj and Bally Nar’s two-year-old daughter Monica was born with kidney failure and has been on the waiting list for an organ transplant for eight months. The family travel into GOSH three times a week so that Monica can have essential dialysis, with each session lasting four hours. Sanj said: “We have received fantastic care at GOSH but we know the only long-term answer to help Monica experience life like any other child her age is a kidney transplant.

“Please stop and take a moment to think about signing up to the organ donor register. It doesn’t take long to do and your decision could provide the most incredible gift of life for the many children like Monica who are waiting for a transplant.”

Between 1 April 2015 – 31 March 2016, surgeons at GOSH performed:

• 26 kidney transplants
• 15 heart transplants
• 7 lung transplants

Great Ormond Street Hospital is one of the world’s leading children’s hospitals. Pioneering research and treatment gives hope to children from across the UK with the rarest, most complex and often life-threatening conditions.

To join the NHS Organ Donor Register visit www.organdonation.nhs.uk or call 0300 123 2323. Tell your family you want to donate too.

Monica, who is now two and a half, was first referred to Great Ormond Street Hospital (GOSH) when she was just a week old. Her mother Bally’s pregnancy had gone to plan, however, shortly after the birth doctors noticed Monica was having difficulties passing urine and her abdomen was beginning to puff out. Recognizing the complexity of her case, doctors sought a referral to GOSH and she was transferred by a special CATS ambulance.

Once admitted to GOSH, Monica had a blood test and just two hours later the clinical team were able to share the news that she had kidney failure. Monica’s father Sanj explains: “The diagnosis came as a total shock and it took a long time to get our heads round it.”

Monica moved on to Eagle ward, the hospital’s specialist ward for patients with renal conditions, beginning an inpatient stay that would last six months, with Sanj and Bally staying by her bedside. At just three months old Monica’s renal function stopped entirely, and Monica had surgery to have her kidneys removed.

To fulfil the role of the kidneys, Monica commenced peritoneal dialysis, where a catheter is inserted into the abdomen enabling waste products to be removed from the blood and excess water from the body. Sanj and Bally were taught by the hospital’s specialist nursing team how to administer this form of dialysis so that Monica could leave hospital, and with regular check-ups Monica was finally able to live at home.

However, a year later Monica caught an infection that meant her catheter line had to be removed and she was no longer able to continue peritoneal dialysis. Instead, she moved on to the second form of dialysis, haemodialysis, which involves filtering out waste by passing blood through an artificial kidney machine. This requires regular trips to hospital; three times a week – every Monday, Wednesday and Friday - Bally and Sanj commence the hour and a half journey with Monica from their home in Bedford to GOSH so that she can be linked up to the dialysis machine for four hours on Eagle ward.

Sanj says: “Day-to-day we need to be really careful about where we take Monica, due to the risk of infection which can cause real problems, so things that other families might take for granted like trips to the zoo are out of the question. Unfortunately two weeks after starting nursery, Monica caught an infection so we had to withdraw her.” Bally and Sanj have both given up work so they can be full-time carers to meet Monica’s needs.

Sanj adds: “Monica loves Peppa Pig and her older brother Ryan, who is very protective of his little sister.”

The medical team determined Monica was a suitable candidate for a kidney transplant, which would mean an end to needing dialysis and such regular trips to hospital. Sanj had hoped to donate one of his own kidneys but they weren’t suitable. Monica has now been on the transplant list for eight months, waiting for a matching donor organ to become available.