At the very outset, I would like to say that my memoirs chronicle not my success but the unimaginably tough times that were my companions for 32 years
— ANITHA JAYADEVAN, Malicious Medicine: My Experience with Fraud
and Falsehood in Infertility Clinics
When Anitha Jayadevan’s father, Kuttan Nair, spoke to Tehelka, there was a determined and calm tone to his voice. Paternally protective, he tried to keep his daughter away from any possibility of pain that could stem from an attempt to recount an ordeal. “My daughter has taken too much for too long,” he says. “I can respond to all your questions. After all, I was there with her from the beginning of this case to
The story of Anitha’s ordeal at the hands of a powerful lobby of doctors is one that befits many adjectives. It is tragic, horrifying, painful, courageous and moving. It is the tale of a woman’s desire for and anxiety over motherhood and the subsequent violence that she underwent at the hands of unjust and irresponsible medical professionals.
The beginning of the ordeal
At the age of 23, Anitha was married to N Jayadevan, a lawyer. At 24, after celebrating her first wedding anniversary, she was at the doorstep of an infertility clinic. A year’s delay at conceiving and the history of an ovarian cyst had worried Anitha enough to seek medical help. A preliminary examination at a clinic in Thrissur in Kerala found no anomalies in the couple. Despite having such assurances, they were given pills to stimulate spermatogenesis and ovulation. The results that emerged did not indicate anything different. They were healthy.
Instead of assuring the couple to wait it out, the therapist suggested laparoscopy and emphasised his point by referring to a case where a couple was blessed with a bonny child. This phase of fertility treatment went on for two years until the couple decided to look for another opinion.
The second trial
“There was an issue with the results. The laparoscopic results did not show an evidence of endometriosis,” recalls Anitha’s father. “But these things came into the picture when she went for another laparoscopy by another specialist. By then, it was too late. She had lost an ovary during her treatment with the first specialist.”
In the second phase of her treatment by another specialist in the same town, the questions that rose around Anitha’s reproductive health were steeped in confusion. Was she healthy as the first specialist thought her to be? How did the laparoscopic results fail to show a possible endometriosis? How did the doctor continue the treatment for two years without being privy to such a possibility?
Most of these questions were answered by the second specialist that Anitha met. According to him, Anitha was hale and hearty until she began her first cycle of treatment. But an outmoded method of using endometrial biopsies to assess ovulation had led to formation of viable cells around her uterus. In layman’s terms, the treatment itself made her partially infertile.
Though the second specialist was far more skilled than the first, his unapproachable nature and busy schedule kept the couple away from continuing treatment at the clinic. They opted out of the second phase during late 2000.
“We recalled seeing a very high-sounding and flamboyant ad of a clinic in a prominent newspaper dated 31 January 2001. It claimed the clinic had unfailing systems for conducting infertility treatment. It is said that infertility treatment was conducted in the clinic based on the evidence of infertility,” writes Anitha in her book, Malicious Medicine: My Experience with Fraud and Falsehood in Fertility Clinics, which was published in 2009.
In any analysis of a product’s market potential, there is always a story of fuelling demand and providing maximum coverage to raise its selling capacity. Anitha’s story of being hoodwinked is no different. In their moment of desperation, they approached cimar, a wing of Edappal Hospitals Pvt Ltd, which advertised a set of procedures, including intra cytoplasmic sperm injection (ICSI), intra uterine insemination (IUI) and in vitro fertilisation (IVF). At that time, i.e., 2001, a single cycle of icsi was priced at Rs 35,000. Despite being exorbitantly expensive, the couple went ahead with the procedure, hoping it would finally give them a child.
Anitha’s memories of her subsequent clinical trials at the hands of CIMAR are heart-rending. The hospital staff and doctor were often found to be irresponsible and grossly negligent. Despite all that, Anitha conceived and tests showed that she had a pair of twins in her womb. Complications began when the staff at CIMAR missed seeing a complex mass around Anitha’s right ovary. At that time, Anitha was in terrible pain and in need of urgent medical help. Soon, one of the twins was aborted without the permission of the couple and they were told about it only later.
“When I look back, I think we could have waited for more than a year instead of approaching a clinic. Because if we had waited, she would have conceived naturally,” says Nair. Anitha’s yearning to be a mother was replaced by her battle for survival as the hospital continued its misdeeds. In what could only be called a delayed diagnosis, the hospital became aware of an ovarian cyst around Anitha’s right ovary. But, by then, it was too late.
Anitha was retching, bleeding and suffering from immense pain. Soon, a surgery took place and her child was removed from her womb.
The loss of her child and the near-death experience had left the family shaken. But there was worse. The family found out that the hospital had used donor gametes upon Anitha. Once the couple initiated legal proceedings, the hospital admitted in a legal notice of having used donor gametes. It also mentioned that Anitha had given her oral consent for that. This led to a 10-year-long legal battle between the couple and the hospital. In 2013, the family opted out of the legal process by accepting compensation, citing personal reasons. “We fought for 10 years and my daughter stood firm all that while,” says Nair. “By 2013, she had almost become mentally disturbed because of the continuous subjection to a painful memory.”
Nair speaks of how doctors and government officials tried to stop the couple from proceeding further with the legal battle. “I was told by many to withdraw the case. Government officials kept raiding the small business I owned,” he says. “The Thrissur Medical Council, which had recommended the revoking of the doctor’s license, later said that it was a mere warning to the doctors.”
Anitha’s son is now nine years old. Even with the loss of a fallopian tube, an ovary and the possible scenario of an infection in the right ovary, Anitha conceived without any ‘foreign interventions’. “Ever since Anitha conceived, we not only fought against the clinic, but also did more research to understand why our country has never thought of implementing a law to curb the proliferation of unqualified infertility specialists. For instance, do you know that there are many countries that require embryos for research? Who is the provider there? Why did the Indian Council of Medical Research mention the sale of embryos as a possibility in 2005 and how did it disappear later when the ART Bill came into existence?” asks Nair.
‘I advise people against opting for assisted reproductive technology’
Jewellery designer Parul’s younger daughter turned one last week. She feels blessed with her two daughters. But she shudders when she thinks of her life seven years ago. She had given up on having a child after two failed attempts at intrauterine insemination (IUI) and one at in vitro fertilisation (IVF). After three years of marriage, Parul was diagnosed with polycystic ovarian disease (PCOD). She tried conceiving while undergoing the treatment, but did not succeed for a year. She was then referred to the infertility department of the hospital, where she was advised to undergo IUI without any counselling. “The doctor told me that almost everyone conceives in two-three sittings and that the cost of each sitting was 50,000. We tried and failed twice,” says Parul.
A year later, in 2007, an acquaintance told her about an IVF clinic in Agra. Unaware of the potential risks and failure rates of IVF, she decided to try it out. “I entered the lobby of that clinic to be greeted by a wall of photographs of smiling people, who had had babies through IVF. It was alluring and made me feel like I was in safe hands,” she says. However, after a failed attempt on which she spent 80,000, she gave up on assisted reproductive technology.
She conceived normally in 2008 and had a second child in 2013. “Now, whenever I meet people who are unhappy about being childless, I advise them against undergoing IUI or IVF,” she says.
‘The clinic exaggerated its success stories to get our money’
Geeta (name changed) and her husband had patiently waited to conceive a baby four years into their marriage. They consider themselves lucky as their parents had not put pressure on them to consult doctors. But Geeta was keen to have a baby and decided to consult a local gynaecologist. She was diagnosed with tubercular infection of the fallopian tube. The doctor told her that the uterus, the ovaries and the fallopian tube were the three organs essential for conceiving.
Disheartened with the diagnosis, she went through one year of treatment. The couple waited one more year, but they still did not conceive. Then the gynaecologist advised them to consider in vitro fertilisation (IVF). The couple did some research and found out that ivf offered only slim chances of success. Yet, they visited an infertility clinic in New Delhi and it took the staff only a few minutes to convince them to undergo the procedure. “The highlighted only the positives and said it was a very simple procedure through which people with severe health disorders had conceived. By telling me the procedure was easy, they took advantage of my emotional state,” she says sobbing.
Over the next month, Geeta and her husband tried conceiving twice and failed. They had spent over 2 lakh on the procedure, medicines and tests. Five other couples had undergone the treatment along with them. Three of them conceived, of whom two had miscarriages and one had a baby. “They told us that our dream would come true. But it didn’t, just like what happens to the dreams of the thousands who want to become film stars,” she says. “The clinic exaggerated the success stories to get our money.” Throughout her association with the infertility clinic, she was never counselled on the potential side effects of egg harvesting.