Swelling, bleeding and even death – women who donate their eggs face many medical risks

Last year, shortly after she had donated her eggs for the eighth time since 2009, Shabana Memon* resolved never to undergo the procedure again. “The swelling began after I took the injection for donating eggs at a clinic in Thane,” said 31-year-old Memon, who lives in the Mumbai neighbourhood of Wadala. The infertility clinic paid Memon Rs 28,000 to undergo the procedure and retrieve her eggs. The clinic told her that she had developed an allergy and gave her a course of medicines free of cost. They asserted that the swelling was not related to the procedure. But her condition did not improve. Memon went to another clinic in her neighbourhood and spent Rs 10,000 on treatment.

In April 2018, she visited a clinic in South Mumbai to donate her eggs again, even though the doctor discouraged her from doing so. But she needed the money. Her husband, a zari worker, had been diagnosed with tongue cancer earlier this year. She has three children aged 12,11 and four. “I have five mouths to feed and that can’t be done with a maid’s salary,” said Memon.

Memon is one of the many donors in the $15 billion global in-vitro fertilisation or IVF industry. As the first part of this series explained, eggs donated by women like Memon are surgically extracted from their ovaries and fertilised with sperms in a laboratory to create embryos that are then implanted in the wombs of other women who want children or their surrogates. Many donors are poor women with low levels of education, who donate eggs in lieu of substantial one-time payments – one way to supplement their incomes and support their families.

But the process is not without risk. The egg donor is required to take hormones injections starting from the second day of her menstrual cycle to trigger her body to produce multiple eggs in a single cycle. Without the hormones, the ovaries produce only one or, in rare cases, two eggs. In 2012, 17-year-old egg donor Sushma Pandey died of complications of ova donation following a procedure at Rotunda Clinic in Mumbai. A medical report from Mumbai’s JJ Hospital said that she died due to shock caused by rising hormonal levels as a result of ova donation. Researchers around the world are also looking into whether frequent hormone shots carry the risk of cancer.

Pandey’s mother filed a case with the Maharashtra Medical Council and Mumbai Police in 2013 alleging that the clinic lured her minor daughter into selling her eggs. She said she did not know her daughter was donating eggs. She also moved the Maharashtra Human Right Commission in 2016, which is investigating the reasons for delays in the case.

Scroll.in sent an email to Dr Gautam Allahbadia, group clinical director of the Rotunda, asking for his comments on the case but he had not replied at the time this story was published.

The ethics of egg donation have long been in question. Many doctors and bioethicists maintain that medical procedures should not be conducted on healthy individuals who do not require such interventions to improve their own health. Egg retrievals do not help the donor medically but help infertile couples.

“From the ethics perspective, such groups of people [egg donors] need to be protected with a higher compensation and ensuring that there is adequate medical support,” said Dr Anant Bhan who is a researcher on global health, health policy and bioethics.

Bhan compared an egg donor with a participant of a medical trial who is undergoing the risk of a medical procedure not for his direct benefit. “If there is a higher than minimum risk, the medical community is responsible for providing the best possible care,” he said.

Egg donors are given hormone injections and then undergo several blood tests and ultrasound scans to check whether enough eggs are being produced. Fertility specialists are divided on how many eggs are enough to ensure the creation of embryos. Doctors hope to retrieve anywhere between three and 15 eggs in one round of harvesting. Once the eggs are ready, donors undergo a procedure known in the trade as the “pick-up”: a doctor puts them under general anaesthesia and a needle guided by an ultrasound probe is inserted through the vaginal tissues to harvest the eggs.

The “pick-up” takes less than 30 minutes and the egg donor is discharged from the hospital the same day.

The complication that most fertility doctors discuss with egg donors is ovarian hyperstimulation syndrome or OHSS, where the ovaries swell due to the hormone injections. It causes severe abdominal pain, bleeding and in some cases, a shortness of breath.OHSS can lead to death in some cases. Some doctors ask the egg donor to return after 48 hours for another ultrasound scan to ensure that the swelling in the ovaries caused by hormone stimulation has reduced and that there is no internal bleeding. Many egg donors do not turn up for this follow up, doctors say.

Moreover, if egg harvesting is not conducted carefully, the ovaries can tear and that can lead to bleeding, said Dr Duru Shah, president of the Indian Society of Assisted Reproduction. “There are drugs to address these problems for which the donors need to be monitored for some days following the procedure,” she said.

Risks and complications

Though the medical community is well aware of the risk of OHSS, not many egg donors know about of it. If good clinical practices are followed, a clinic hiring the donors will explain known possible risks of the procedure to egg donors and then get there informed consent. But from interviews by Scroll.in with five egg donors who had donated their eggs on multiple occasions at different clinics across India, it appeared that the consent forms were a mere formality. “I was just asked to sign on a paper and give a copy of my voter ID card,” said egg donor Sheela Patil*, 26, an egg donor from Thane, near Mumbai. She has been donating eggs for five years.

The Indian Council for Medical Research issued guidelines in 2005 according to which donors must not be less than 21 or more than 35 years, but does not set a limit on the number of times a woman can be a donor.

What research shows

In 2017, a commentary published in the Reproductive BioMedicine Online, an international scientific journal, discussed the cases of five women who underwent ovarian hyperstimulation when they were treated for infertility. All the five women had developed breast cancer roughly five to ten years after they took hormone injections. The lead author of the study Dr Jennifer Schneider says that the five women had contacted her to make more people aware of the risks of the ovarian hyperstimulation stimulation.

But the researchers also point out that that infertile women and egg donors are medically different groups, with few similarities. Egg donors are usually healthy women in their 20s or early 30s with no pre-existing illness. “The paper on risk of breast cancer gives data about infertile women who underwent hormonal stimulation, not young healthy egg donors, and explains that these are two different populations,” Schneider told Scroll.in in an email. “I can’t provide any data on egg donors because it doesn’t exist.” Unlike the developed world, Indian egg donors may not be in the best of health as they belong to lower socio-economic class, where women are known to be anemic and underweight.

Schneider suspects that the lack of studies on the effects of hormones on egg donors is the consequence of the resistance on the part of infertility clinics globally. “What happens if these studies are done and it turns out that there is an increased risk of various cancers?” she asked. “That would certainly decrease the number of potential egg donors, and the IVF providers would not be happy about that.”

Schneider started research on egg donation after she lost her daughter, Jessica Wing, to colon cancer four years after she had made her last donation. Wing decided to become a donor after seeing advertisements on her college campus. She donated her eggs three times. It is difficult to link Wing’s death to egg donation but Schneider’s case reports suggest the need to dig deeper into the long-term health consequences for egg donors.

Though there is little known about the link between cancer and egg donation, many Indian doctors and infertility specialists from the United Kingdom and the United States have emphasised that the absence of proof does not necessarily mean a proof of absence. As a consequence, many medical professionals want their colleagues to refrain from saying that the egg donor procedure is known to be safe.

The discussion about the harmful effects of egg donation started around the world in 1989 when a 32-year-old woman in London who donated her eggs to her younger sister developed colon cancer and died of it in 1994. Dr KK Ahuja, the managing director of The London’s Women Clinic, published a paper to discuss the long-term consequences of some forms of assisted conception that discusses potential but still unproven risks from stimulatory drugs. Schneider maintains that in the last twenty years medical professionals around the world have failed to document potential risks associated with egg donation or dispel the possibility of such risks. Ahuja said that the conflict remains unresolved.

An editorial in Reproductive Biomedicine Online by Ahuja’s colleague Bart CJM Fauser and Juan Garcia Velasco points out that “medical policy cannot be based on isolated examples rather there is the need for population controlled studies with validating statistics, which is currently not available”. However, in a country like India, medical policy must protect the rights of the women for lower socioeconomic backgrounds who end up as donors, even in the absence of evidence from broad-based studies.

There is also some suspicion that women who donate eggs and become surrogates have even higher risks of cancer and other diseases. While any such conclusion is premature in the absence of studies, health activists argue that the industry still needs better regulation – whether there is research on the subject or not.

“For studies to be conducted, we will need a large number of people who get impacted,” said Jennifer Lahl, president of The Centre for Bioethics and Culture. “Does it mean we have to wait for many egg donors to suffer?”

Tracking donors

Ahuja and a few Indian doctors said that one way to protect the health of egg donors is by maintaining a registry for egg donors. “Money is the biggest motivator for egg donors,” said Dr Anjali Deval, a fertility specialist who runs a clinic in Parel in Mumbai. “I come across women who donate every month which is very risky for their health. I reject them but I won’t be surprised if some other doctor enrolled them unknowingly.”

As a solution, Dr Ahuja has championed the concept of egg sharing. “In this case, only women who are going through IVF treatment themselves may act as egg donors by allocating a pre-agreed proportion of their eggs for matching with an anonymous recipient,” he said. “In return they receive subsidised treatment but no other monetary compensation.”

China follows a system in which only egg sharing is permitted for infertility treatments.

The Indian Council of Medical Research guidelines also encourage egg sharing. Dr Deval said that so far only two women who were undergoing IVF procedure at her clinic have opted for egg sharing. “The ones who donate their eggs gets some discount for her IVF procedures,” she said.

Sushma*, an agent in Mumbai who finds donors and surrogates for infertility clinics, said that little changed after the Indian Council for Medical Research in 2014 in accordance to the Assisted Reproduction Technology (Regulation) Bill asked clinics to get donors and surrogates through agencies registered with the Council. “If the government wants to do something, they should give egg donors higher compensation and health insurance,” she said.

If the concept of egg sharing becomes popular, women like Shabana Memon will be out of business. Despite the health risks, egg donors and agents say they want to continue to be part of the industry. They hope it will give their children a better life and want to ensure that their daughters will not have to sell their own eggs to survive. Said Memon, “I am doing it out of distress. I would never wish this on my enemy.”

*Name change to protect identity.