Rare liver transplant mum supports need for more black blood and organ donors as policy changes

A mother who needed a liver transplant due to sickle cell complications is supporting a call for more people of black heritage to donate blood and organs.

Toks Odesanmi, 51, from Colchester, is one of only a few people known to NHS Blood and Transplant to have received a liver transplant for sickle cell complications over the past 20 years. Only around 50 cases of liver transplant for sickle cell have been reported in medical literature worldwide.

She now receives regular red blood cell transfusions exchanges every 6 weeks – all her sickle blood is removed and replaced with donor blood – to help protect her donor liver from the same damage

Updated transplant policies

NHS Blood and Transplant has this month updated its liver transplant policies so that liver transplant can now be recommended as the treatment of choice for highly selected sickle cell patients with liver failure due to sickle hepatopathy, following stringent review.

This change also coincides with sickle cell awareness month, held in September.

Sickle cell is more common in people of Afro-Caribbean heritage. It causes the blood cells to form into a crescent or sickle shape. These deformed cells can block blood vessels, which can cause tissue to die. Sickle cell is also associated with other forms of liver damage, such as iron overload or cirrhosis.

While liver transplant may not be suitable for some sickle cell patients with liver failure, especially those with multiple complications which make their chances of survival poor even with a transplant, it could be a lifeline for others.

The policy has been changed based on a review by the NHSBT-managed Liver Advisory Group, which includes clinicians from across the UK.

Toks' story

Toks said:

"I am very grateful to the family who donated the liver. I wouldn’t be alive without that gift.

"My daughter Jadesola is 17 in October, and I get to see her grow up.  My daughter would be without a mother if I hadn't had a donor. I was so worried she would not even remember me."

Toks has encouraged her daughter and family members including her friends to join the NHS Organ Donor Register.

Toks particularly promotes blood and organ donation to people of African and Caribbean heritage, as people can face longer waiting times and worse outcomes due the shortage of ethnically matched donors.

Only 2% of blood donors are Black which makes it hard to find the best matched blood. Black people also make up 2% of people on the NHS Organ Donor Register but 8% of the people who die waiting for a transplant are Black.

"I am so passionate about donation, I advocate for it. I am an ardent campaigner for blood and organ donation," said Toks.

"With Black African people, I think it's difficult especially where religion is concerned some people think if you die without some body parts you may not take it to heaven.

"The main barriers are education, awareness, information, and religion.

"I think with sickle cell and blood donation, there are a lot of campaigns, and a lot of people now know it exists and know the implications of the illness. When it comes to organ donation, I think it's a whole new topic. A lot more work needs to be done."

Toks had her live-saving transplant in May 2015.

Her liver problems were discovered after she took up an offer from her GP of a standard NHS health check aimed at the over 40s.

Toks said:

"I had never known about that as a sickle cell complication before. I knew about the risk of strokes. I'd had hip replacements and the occlusions to the back of the eyes. But I had never heard about anyone with sickle cell having an organ transplant. It was a real shocker for me."

Statement

Statement from Professor Derek Manas

Professor Derek Manas, NHS Blood and Transplant Director of Organ and Tissue Donation, said:

"Sickle cell disease can lead to a spectrum of liver complications collectively termed sickle hepatopathy and includes acute liver failure in its severest form. With the recent changes in NHSBT policy more carefully selected patients with sickle cell disease if referred early enough may become eligible for liver transplantation, and this change with individualised risk-benefit assessment could give them a 'lifeline'.

"But the sad reality is that there are not enough ethnically matched organ or blood donors to give patients like Toks and other people with sickle cell disease the best possible treatment.

"People suffer serious complications or even die due these shortages. You can help change that by supporting donation on the NHS Organ Donor Register and registering as a blood donor."

Statement from Dr Abid Suddle

Dr Abid Suddle, Consultant Hepatologist at King’s College Hospital NHS Foundation Trust

Dr Abid Suddle wrote the paper proposing the change, which was then supported by the NHSBT-managed national Liver Advisory Group. He said:

"Previously, there has been caution regarding liver transplantation in adult sickle cell disorder patients with liver failure due to limited worldwide experience, and initial sub-optimal results.

"By carefully selecting potential candidates for liver transplant, and with close liaison with haematologists to optimise the management of sickle cell disorder, we have characterised a group of patients with sickle cell hepatopathy who will benefit from liver transplantation.

"We are delighted that criteria for liver transplantation in adults have been adopted by NHS Blood and Transplant."

Statement from John James OBE

John James OBE, Chief Executive, Sickle Cell Society, said:

"Toks' courage shows what a donor's gift can make possible and reminds us of the far-reaching effects that sickle cell disorder has on people's lives - and the lives of their loved ones.

"We welcome the policy change that recognises liver transplant as a lifeline for carefully selected people with sickle cell. If you are of Black heritage, please consider joining the Organ Donor Register because that one act could change — and even save — someone's life."

What you can do

Confirm your decision to donate on the NHS Organ Donor Register.