Mom's agony: Do I give my baby my HIV or do I watch her die?
Read on to find out how this risk-fraught liver transplant went, and what it means for the future of such surgery in SA
Would you give your child HIV to save their life? The question reads like a line from a Jodi Picoult novel, but for a South African mother, this was no fiction thriller – it was a life-and-death scenario.
The desperate mother, who is HIV-positive, decided the answer to that question is “yes”, and donated part of her liver to her HIV-negative baby who was dying of end-stage liver disease.
Today, a year later, her baby is healthy with no trace of HIV.
The 13-month-old had waited 181 days for a donor. The average wait in South Africa, a country short of organs, is 49 days.
In fact the mother didn’t just agree to the procedure, but was the one who asked doctors to consider it.
The “living liver” donor programme has run at Wits Donald Gordon Medical Centre since 2013, having been created because of a severe shortage of organs. The donor, usually a parent, donates part of his or her liver. The donor's organ grows back within six weeks.
But until last year, only HIV-negative donors were used.
Transplant surgeon Dr Jean Botha, a professor of surgery at Wits University, said: “The mother forced us to think hard about this ... We had to think: Is it possible and can we do it?”
With no organs available, he said “the window of opportunity was closing” for this baby who was at death's door.
“The family continued pushing us and the [HIV-positive] mom asked: ‘Why are you excluding me?’”
Ethicist Dr Harriet Etheredge, who explored the ethics of the procedure before it was conducted, said: “Parents will often stop at nothing to save a life of child.”
A person called a donor advocate was involved to ensure the mother understood all the risks of her decision. Etheredge and the team consulted doctors and ethicists internationally and put the proposal to the Wits medical ethical committee that has to sign off on all medical research.
It approved the procedure.
Etheredge said: “To further complicate matters, the child was too young to make decision about whether they wanted to live with HIV ... Ultimately we had a brave set of parents making a difficult decision.”
The risks of HIV transmission and the drugs used to try and prevent transmission were explained to the mother who had already given birth to the HIV-negative child because she was an ARVs.
The night before the operation, three HIV preventative drugs were given to the infant. Straight after the operation, the child was placed on ARVs, which can prevent infection if given within 72 hours of a person being infected with the virus.
But HIV clinician Francesca Conradie said the doctors had no idea if the antiretrovirals would prevent transmission during “solid organ transplantation”.
“This has never been done before,” she said.
A month after the operation, tests showed the healthy child had HIV antibodies, meaning the toddler's body was fighting the virus. Initially doctors believed the child was HIV-positive. But now it seems the antibodies may have been from the mom's transplanted liver, a theory that explains why the number of antibodies have waned over time.
Scientists then looked for the virus in the child's blood and could not find it.
Then they turned to more sophisticated testing by looking for HIV DNA in the body. They still cannot find any.
Caroline Tiemessen, research professor at the School of Pathology at Wits and the National Institute for Communicable Disease, said if the toddler was HIV-positive, the virus DNA should be traceable. Yet, they cannot detect it.
“At the moment, we are developing new methods for testing the child, and we hope to be able to have a definitive answer ... in future. For now, the child will remain on antiretroviral drugs until we have a more comprehensive picture,” said Tiemessen.
Conradie said in some ways, whether or not the child had HIV, is a “moot” point.
She explained HIV is now a chronic disease with almost normal life expectancy.
This operation, a world first, has opened up a new pool of donors in a country severely short of them.
Dr June Fabian, a nephrologist and research director at Wits Donald Gordon Medical Centre said: “We hope that this ground-breaking operation will be the first of many like it and will contribute towards promoting justice and equity in liver transplantation in South Africa.”
The team will be doing more HIV-positive transplants to HIV-negative children when there are no organs from HIV-negative donors available.
There are 7 million HIV-positive South Africans, according to the latest Human Sciences Research Council data.
The family of the child has asked not to be identified.
The results of the operation were published on Thursday in the international journal AIDS.