A mother once gripped with despair and uncertainty over her 7-year-old child’s severe sickle cell disorder, now finds hope and confidence after a successful bone marrow transplant.
The child was one of the first two recipients of the high-level treatment, which was performed by the Lagos University Teaching Hospital (LUTH) with the support of the Sickle Cell Foundation of Nigeria (SCFN).
With the average life expectancy of people living with sickle cell disorder pegged at 20 in Nigeria, the mother thought her child was living on borrowed time.
All of that fright is now in the past.
“She’s doing very well. She is now putting on weight and the mother says they have to be careful that she doesn’t gain too much,” Annette Akinsete, chief executive and national director of SCFN said at a media briefing in Lagos.
In a post-transplant message shared with the SCFN, the joyous mother said: “Our bone marrow transplant experience has been remarkable, filled with hope and certainty. I felt confident in the exceptional care that we received at SCFN, LUTH BMT Centre.
“From the moment of admission to discharge, the medical staff provided round-the-clock attention. The post-transplant care has also been thorough and attentive, with regular check-ins, adjustments to medication, and detailed follow-up tests. I truly couldn’t ask for a better experience.
The cost of treatment abroad is simply too high. I am deeply thankful to SCFN for their dedication to making this cure possible and accessible, turning hope into reality for us and so many others. It is hard to put into words how grateful I feel.”
The 7-year-old patient was predicted to spend 30 days under transplant treatment and post-transplant monitoring.
She spent 11 days, instead due to a healthy outcome and fast recovery.
The foundation plans to extend this cure to as many Nigerians who need it, given Nigeria’s position as the sickle cell disorder capital of the world, with over 4.3 million grappling with the diseases as opposed to 100, 000 in the United States.
Akinsete said the entire team is working to aggregate the various costs incurred for this treatment before determining a fixed cost.
She further explained using a donor from a family member is an established cure for the disease, which was first used more than 30 years ago.
Bone marrow transplant was associated with known complications such as infection and graft-versus-host disease (when donor cells can attack the patient), infertility, and even death.
However, the procedure has improved over the last 20 years to ensure good outcomes and limit complications.
“Bone marrow transplant is now an approved therapy for children and adults with severe sickle cell disease. Bone marrow transplant is a complex procedure requiring a multidisciplinary team approach and involves treatment and close follow-up for approximately 12 months,” she said.
The complexity and costs have severely limited those who can obtain this treatment, and most have sought this treatment outside Nigeria, which causes severe hardship for patients and families, who return home without local expertise for follow-up.
“This LUTH/SCFN bone marrow transplant programme consists of a high-level multidisciplinary team. The program has been guided by the scientific expertise and leadership of Professor Adetola Kassim of Vanderbilt University Medical Center, USA who joined the program in 2018,” Akinsete said.
“To further strengthen their expertise in the program, Prof Josu de la Fuente from the Imperial College London Healthcare NHS Trust UK joined the team in 2022 as a resource person and assisted with the paediatric aspects of the programme. Transplant Nursing has been supported by the Worldwide Network for Blood and Marrow Transplantation (WBMT), which offers in-person and virtual training at periodic intervals.”
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