'Rescuer child': how do children who were born for the sake of donation live

The story of India's first "child rescuer" made the front pages of local media. She also raised the issue of ethics in using technology to create a child just to save or cure a brother or sister, moreover, in a country with imperfect legislation. The correspondent talks about this with the BBC Geeta Pandey from Delhi. Next - from the first person.

Photo: Shutterstock

Kavya Solanki was born in October 2018, and in March, when she was 18 months old, her bone marrow was taken and transplanted to Abhijita, her seven-year-old brother.

Abhijeet suffered from thalassemia major, a disorder that causes very low hemoglobin levels and requires constant blood transfusions.

“Every 20-22 days he needed 350 to 400 ml of blood. By the age of six, the boy had received 80 blood transfusions,” Sachdevsinh Solanki’s father, who lives in Ahmedabad, the largest city in the western state of Gujarat, told me in a telephone conversation.

“Abhijeet was born after my first daughter. We were a happy family. He was 10 months old when it was discovered that he had thalassemia. It shocked us. The boy turned out to be weak, his immune system was impaired, and he was often sick,” the father said.

“And when I learned that there was no cure for his illness, my grief doubled,” Solanki added.

To better understand his son's condition, he began reading all the literature he could find about the disease, researching possible treatments and seeking advice from medical experts.

Hearing that bone marrow transplantation aids sustainable recovery, he began researching the topic. But the marrow of family members, including elder sister Abhijit, did not fit.

In 2017, my father came across an article about “rescue babies,” who are created to donate organs, cells or bone marrow to a brother or sister.

He became very interested in this, and he approached Dr. Manisha Bunker, one of the most famous fertility specialists in India, and convinced him to create a thalassemia-free fetus for the treatment of Abhijit.

Solanki says they chose to have a “rescue baby” because there was no other choice. One hospital told him that they had found suitable bone marrow in the United States. But the cost was enormous - from 5 rupees ($000) to 000 rupees - and since it was not a related donor, the chances of success were only 68-10%.

The technology that was used for Kavya's birth is called preimplantation genetic diagnosis - it allows you to remove the disease-causing gene from the embryo. It has been used in India for several years now, but this is the first time it has been used to create a “rescuer child.”

Dr. Bunker says it took him more than six months to create an embryo, get screenings and compare to Abhijit. Only when it was possible to achieve a perfect match, the fetus was transplanted into the womb.

“After Kavya was born, we had to wait another 16-18 months for her to weigh 10-12 kg. The bone marrow transplant was done in March. We then waited several months to see if the recipient accepted the transplant before announcing it,” he said.

On the subject: The world's first donor sperm bank with HIV was created: why is it needed

“Seven months have passed since the transplant and Abhijeet did not need another transfusion,” says Solanki. “They recently took a blood test, and now his hemoglobin level is more than 11. Doctors say that he has been cured.”

Dr. Deepa Trivedi, who performed the transplant, told the BBC that after the procedure, the hemoglobin level in Kavya's body dropped, but then he fully recovered.

“Both Kavya and Abhijeet are now completely healthy,” she said.

According to Solanki, the birth of Kavya changed their lives: “We love her even more than our other children. She is not just our child, she is the savior of our family. We will always be grateful to her."

Adam Nash was born in the United States 20 years ago to become a donor for his six-year-old sister, who suffered from Fanconi anemia, a rare and fatal genetic disease. He is considered the world's first "brother rescuer."

At the time, many questioned whether the boy was truly wanted or simply "created as a medical commodity" to save his sister. Many also wondered if this would pave the way for eugenics or “designer babies.” The debate reignited in 2010, when the birth of the first "rescue baby" was announced in Great Britain.

The birth of Kavya raised the same questions in India.

“There is an ancient ethical problem: as Kant (German philosopher Immanuel) said. Ed.), you should not take advantage of another person, including for your own benefit,” says Professor John Evans, who teaches sociology at the University of California and is an expert on the ethics of altering human genes.

The birth of a “rescue baby” raises several questions and, he reminded, “the devil is in the details.”

“We have to look at the parents' motivations. Are you having this child solely to create the perfect genetic material for your [diseased] child? If this is so, then you are risking the child without his consent,” he believes.

Also, according to him, the question arises: why use a “rescue child”?

“On the one hand, there is the use of cells taken from the child’s umbilical cord, and on the other, organ donation. Bone marrow harvesting falls somewhere in the middle - it is not zero risk, but it is not as traumatic a procedure as organ removal, which would cause irreparable harm to the donor,” says Professor Evans.

But the most important ethical question, in his opinion, is where to stop.

“It is a very slippery slope and it is very difficult to put barriers on it. It’s one thing to create a child for bone marrow donation, but will they stop there and move on to modifying genes in people already born?”

The UK, he says, has a strict regulatory system used to grant approval for genetic biotechnology, which makes it difficult to cross the border.

“But Indian law is not that robust, and it’s like opening Pandora’s box,” says journalist and writer Namita Bhandari.

“I don’t want to judge the Solanki family,” she says. “In a similar situation, perhaps I, as a mother, would do the same.”

“But we need a regulatory framework. At the very least, a public discussion is needed, not only with medical professionals, but also with children's rights activists. This child was conceived without debate. How can such an important thing go unnoticed,” says Ms. Bhandari.

Mr. Solanki, a Gujarat official, says outsiders are not good at judging his family.

“We live in this reality. We must look at the intentions of the people behind the action. Put yourself in my shoes before you judge me,” he noted.

“All parents want healthy children, and there is nothing unethical about wanting to improve the health of your child. People give birth to children for various reasons - so that there is someone to take over the family business, to continue the family line, or even just to have company for their only child. Why are you so picky about my motives? - asks the father.

And Dr. Banker believes that if with the help of technology it is possible to create children who will not get sick, then why not do it?

“The main issues to consider in India are regulation and registries. But you can’t ban a technology just because someone could potentially abuse it,” says Bunker.

On the subject: In New Jersey, a bone marrow donor died during surgery: his family are suing doctors

Screenings to identify babies at risk of Down syndrome have been used since the 1970s, and Dr Bunker says gene deletion is much like that procedure: it's a "next step" that aims to eliminate the disorder in future generations.

He says that in the Solanki family's case, they did only a "one-time procedure with minimal risks" and the result, he says, justifies the cost.

“Before this, Abhijeet’s life expectancy would have been 25-30 years, but now he is completely cured and will have a normal life expectancy,” sums up the doctor.

Read also on ForumDaily:

Cyber ​​Robin Hood: hackers donated stolen money to charity

Insidious 'affectionate killer': for which they gave the Nobel Prize in medicine

Israeli doctors have found a way to save patients with COVID-19 in critical condition

Americans want to be banned from adopting children in Latvia

Do you want more important and interesting news about life in the USA and immigration to America? — support us donate! Also subscribe to our page Facebook. Select the “Priority in display” option and read us first. Also, don't forget to subscribe to our РєР ° РЅР ° Р »РІ Telegram  and Instagram- there is a lot of interesting things there. And join thousands of readers ForumDaily New York — there you will find a lot of interesting and positive information about life in the metropolis.