India has 40 million carriers of thalassemia. 100,000 out of that die before they turn 20 due to lack of access to treatment. Photo via Unsplash
Sahdev Singh Solanki, a resident of Ahmedabad, the largest city in the western Indian state of Gujarat, remembers the last seven years very clearly. “Our lives only revolved around our son,” the 37-year-old government employee, told VICE News. Solanki’s son, Abhijeet, is seven years old. He was born with thalassemia major, a genetic disorder which leads to low haemoglobin count in the blood. One life-saving treatment is constant blood transfusions.
Up until February this year, Abhijeet had received up to 80 blood transfusions since he was born. “This is a genetic disorder, and of a rare kind. It has no straight treatment,” said Solanki. “We mostly got blood transfusions through donors and blood banks, just to maintain his routine life.”
The other option—and a life-altering one—was a bone marrow transplant. The family’s bone marrow, including that of Abhijeet’s older sister, did not match. In 2017, Solanki came across the “saviour sibling” experiment—a baby created to be a donor of organs, bone marrow or cells to the elder sibling.
“Without the bone marrow transplant, the son’s life expectancy, even with the blood transfusions, was 25-30 years,” Manish Banker, medical director at Nova IVF Fertility in Ahmedabad, told VICE News. Three years ago, when the Solankis approached Banker for what they call India’s first “saviour sibling” treatment, Banker came on board.
“This is the first such instance in India,” said Banker.
India has 40 million carriers of thalassemia, out of which 100,000 die before they turn 20 due to lack of access to treatment. Thalassemia major is the most severe form of the disease, which occurs when a child inherits two mutated genes, one from each parent. Every year, 10,000 children with thalassemia major are born in India.
Out of the 18 embryos created in the lab for the Solankis, Banker’s team finally found one perfect match. “It all just clicked,” said Banker. “There is a possibility that none of the embryos matched.”
In 2018, Kavya was born through in vitro fertilisation (IVF) in Banker’s wife’s embryo. Early this year, in March, when Kavya was a year old, the doctors used a part of her bone marrow for Abhijeet’s treatment.
“It’s still a long process,” said Solanki. “My son is treated, but the marrow takes at least 10-12 months to set in and there are fears of reinfection. But you cannot imagine our relief.”
The concept of saviour siblings has roused ethical questions in some parts of the world. The process requires a technique called pre-implantation genetic diagnosis, which is used to screen embryos for a genetically inherited condition like thalassemia, to test if it will match for an existing child. The ones that match are then implanted in the mother’s womb.
In countries where preimplantation diagnosis is illegal, “saviour siblings” have sparked controversy. Many IVF services in India offer preimplantation diagnosis to those who have a family history of serious or deadly disease. In 2004, a paper published in the Journal of Medical Ethics argued that saviour siblings be banned.
Activists have raised concerns and called the process a “means to an end”, while others are alarmed about it giving way to eugenics or designer babies. Some in India, in response to the news of Solankis’ journey, questioned the agency and consent of the child who bears the burden of saving.
“In the case of the Solankis, the bone marrow transplant is a one-time procedure. The child will not go through a life-long donation. Secondly, this is not an organ donation,” said Banker in response to questions of ethics.
“Thirdly, a child with thalassemia major is emotionally draining, with constant risks of infection. A permanent cure can be life-altering,” added Banker.
For Solanki, Kavya came after spending around seven years adjusting the family’s lives around their son. “Not just my wife and me, but also my extended family,” he said. “Having a patient child is very limiting, socially and financially. There was a lot of stress.”
Before Kavya came into being, the family did find a bone marrow tissue match in an unrelated donor in the United States. “That required almost INR 5 million (USD 68,128) to the donor bank, apart from other medical expenses,” said Banker. “And since it was an unrelated donor, there was a 50 percent chance of rejection of the bone marrow.”
The saviour sibling was several months of work—from detecting mutations, to creating embryos, screening them, and finally, matching them. “It takes up to four months to generate all those embryos,” said Banker. “After another 6 months, we found one embryo that satisfied the criteria. It had the successful outcome of a healthy daughter in March, 2019.” The daughter was then screened for a match. The baby was also made to wait a year to gain up to 12 kgs so that she is fit for a transplant.
India also has a social stigma around IVF treatments, where the onus of infertility often falls on the women and stops many men from seeking medical help. “When you talk about IVF, people start thinking of ‘test-tube babies’,” said Solanki. “We didn’t have any fertility problems when we opted for this. All we wanted was to save our child.”
Solanki added that with the support of his family, they did not think about what people would say. “We just wanted our son and our saviour baby to be healthy,” he said. “There is certainly an air of joy in our house.”
For now, the family aims to keep medically monitoring both their children. “Every couple wants a happy, healthy family,” said Solanki. “It’s been so emotional all these years. Now that this is resolved, we will move ahead.”
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Up until February this year, Abhijeet had received up to 80 blood transfusions since he was born. “This is a genetic disorder, and of a rare kind. It has no straight treatment,” said Solanki. “We mostly got blood transfusions through donors and blood banks, just to maintain his routine life.”
The other option—and a life-altering one—was a bone marrow transplant. The family’s bone marrow, including that of Abhijeet’s older sister, did not match. In 2017, Solanki came across the “saviour sibling” experiment—a baby created to be a donor of organs, bone marrow or cells to the elder sibling.
“Without the bone marrow transplant, the son’s life expectancy, even with the blood transfusions, was 25-30 years,” Manish Banker, medical director at Nova IVF Fertility in Ahmedabad, told VICE News. Three years ago, when the Solankis approached Banker for what they call India’s first “saviour sibling” treatment, Banker came on board.
“This is the first such instance in India,” said Banker.
India has 40 million carriers of thalassemia, out of which 100,000 die before they turn 20 due to lack of access to treatment. Thalassemia major is the most severe form of the disease, which occurs when a child inherits two mutated genes, one from each parent. Every year, 10,000 children with thalassemia major are born in India.
Out of the 18 embryos created in the lab for the Solankis, Banker’s team finally found one perfect match. “It all just clicked,” said Banker. “There is a possibility that none of the embryos matched.”
In 2018, Kavya was born through in vitro fertilisation (IVF) in Banker’s wife’s embryo. Early this year, in March, when Kavya was a year old, the doctors used a part of her bone marrow for Abhijeet’s treatment.
“It’s still a long process,” said Solanki. “My son is treated, but the marrow takes at least 10-12 months to set in and there are fears of reinfection. But you cannot imagine our relief.”
The concept of saviour siblings has roused ethical questions in some parts of the world. The process requires a technique called pre-implantation genetic diagnosis, which is used to screen embryos for a genetically inherited condition like thalassemia, to test if it will match for an existing child. The ones that match are then implanted in the mother’s womb.
In countries where preimplantation diagnosis is illegal, “saviour siblings” have sparked controversy. Many IVF services in India offer preimplantation diagnosis to those who have a family history of serious or deadly disease. In 2004, a paper published in the Journal of Medical Ethics argued that saviour siblings be banned.
Activists have raised concerns and called the process a “means to an end”, while others are alarmed about it giving way to eugenics or designer babies. Some in India, in response to the news of Solankis’ journey, questioned the agency and consent of the child who bears the burden of saving.
“In the case of the Solankis, the bone marrow transplant is a one-time procedure. The child will not go through a life-long donation. Secondly, this is not an organ donation,” said Banker in response to questions of ethics.
“Thirdly, a child with thalassemia major is emotionally draining, with constant risks of infection. A permanent cure can be life-altering,” added Banker.
For Solanki, Kavya came after spending around seven years adjusting the family’s lives around their son. “Not just my wife and me, but also my extended family,” he said. “Having a patient child is very limiting, socially and financially. There was a lot of stress.”
Before Kavya came into being, the family did find a bone marrow tissue match in an unrelated donor in the United States. “That required almost INR 5 million (USD 68,128) to the donor bank, apart from other medical expenses,” said Banker. “And since it was an unrelated donor, there was a 50 percent chance of rejection of the bone marrow.”
The saviour sibling was several months of work—from detecting mutations, to creating embryos, screening them, and finally, matching them. “It takes up to four months to generate all those embryos,” said Banker. “After another 6 months, we found one embryo that satisfied the criteria. It had the successful outcome of a healthy daughter in March, 2019.” The daughter was then screened for a match. The baby was also made to wait a year to gain up to 12 kgs so that she is fit for a transplant.
India also has a social stigma around IVF treatments, where the onus of infertility often falls on the women and stops many men from seeking medical help. “When you talk about IVF, people start thinking of ‘test-tube babies’,” said Solanki. “We didn’t have any fertility problems when we opted for this. All we wanted was to save our child.”
Solanki added that with the support of his family, they did not think about what people would say. “We just wanted our son and our saviour baby to be healthy,” he said. “There is certainly an air of joy in our house.”
For now, the family aims to keep medically monitoring both their children. “Every couple wants a happy, healthy family,” said Solanki. “It’s been so emotional all these years. Now that this is resolved, we will move ahead.”
Follow Pallavi Pundir on Twitter.
