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To be born or not: The dilemma of the flawed foetus

Recently 20-year-old Evie Toombes was awarded millions as compensation for being allowed to be born despite congenital spinal deformities

Toombes, a showjumper suffering from spina bifida, sued her mother’s doctor, Philip Mitchell. The judgment holds healthcare professionals liable for improper advice resulting in the birth of a baby with serious deformities. From a legal perspective, in India, termination of pregnancy in case of a severely defective foetus is allowed as per the amended Medical Termination of Pregnancy (MTP) Act 2021.

Doctors usually advise parents when there is risk of foetal deformities. In cases where deformities detected can be treated later, such as cleft lip and palate or club foot, doctors do not recommend MTP. But if the deformity is so severe that the baby is going to suffer, remain wheelchair bound or die early, they do suggest MTP, though the ultimate decision lies with the pregnant woman, who has to give written permission for a medical procedure to terminate the gestation.

Prenatal deformities, causes and detection
Studies show that 5% to 6% of foetuses have some birth defects for no apparent reason. At least one in 150 babies shows some genetic abnormality. Almost 90% of these defects can be detected within the first 12 to 14 weeks of pregnancy, when MTP is possible and safe for the mother.

Elaborating on the various causes of foetal deformities, Dr Sistla Lakshmi Kiran, obstetrician and foetal medicine specialist, Rainbow Hospital, Hyderabad, says, “One of the primary risk factors for deformities in children is the mother’s nutritional and overall health. Organ formation in the foetus starts by five to six weeks and is completed by 12 weeks. But most women confirm pregnancy only after six to seven weeks and then start taking folic acid and other nutritional supplements. This is too late. Healthy diets and nutritional supplements should be started two to three months before becoming pregnant (while planning pregnancy). Prospective mothers should also be screened for abnormal blood sugar, thyroid, haemoglobin levels, etc., to ensure that parameters are normal while planning the pregnancy, instead of doing this midway through the gestation period.”

Certain drugs such as some anti-epilepsy pills and some dermatological medicines are also risk factors. Prospective mothers can consult their doctors to modify treatment modules to prevent harm to the unborn child.
Environmental factors that could cause foetal deformities include contamination of food due to chemical pesticides and exposure to toxic pollutants.
“The unborn baby may also suffer from genetic defects like thalassemia and mental retardation, which happen more commonly due to consanguineous marriages. Those marrying their close relatives should seek genetic counselling before planning a child. Chromosomal anomalies in babies also happen in case of late pregnancy, especially in women over 35 years of age,” says the doctor.

Counselling care
“When a birth defect is diagnosed, the parents need counselling not only by the gynaecologist but also by a foetal medicine specialist and a paediatrician. Based on the experts’ opinions about the baby’s treatment, chances of survival, wheelchair dependency or cure, the couple can take a decision whether to abort the foetus or continue with the pregnancy.” says Dr Lakshmi Kiran.

What the law says
The Medical Termination of Pregnancy (MTP) Act 2021 says the upper gestation limit for MTP is 24 weeks, but this limit will not apply in case of substantial foetal abnormalities diagnosed by a medical board. Kuppili Muralidhar, senior advocate and president, Forum of Legal Professionals (FLP), says, “If the foetus is 24 weeks or less, the mother has the right to get it aborted in consultation with her doctor, without permission from the family, including the father, provided she is mentally stable. But if the foetus is above 24 weeks, then courts and a medical team need to certify the need for abortion, as late MTPs involve risk to the mother.” The Act also stipulates that abortions are to be carried out in registered clinics by registered medical practitioners and not by quacks at dubious clinics. “As per a 2015 report of the Ministry of Health, around 56% of abortions done in India are unsafe,” says the lawyer.

“It is not easy to sue doctors for letting a defective child to come into the world, because the consent is given in writing by the parents,” points out Kuppili Muralidhar. “The ultimate decision to abort or not lies with the mother. The doctor just explains to the couple the risks and possibilities based on the scan and test reports.”

“Violation of Right to Life”
G Hymavathi, former chairperson of AP State Commission for Protection of Child Rights (APSCPCR), says, “Aborting a foetus owing to some deformities goes against the principle of the Right to Life. We can’t encourage or support such a move. Only if the pregnant mother’s life is at risk can a decision to abort be taken, to save her life.” While noting that parents may resort to aborting a defective unborn child or abandoning it just after birth, she asks, “what if a perfectly normal child meets with an accident and develops deformities? Will the parents consider killing him, or try for the best possible treatment and care to provide him a normal life?”

She also points out that “a healthy normal child may become a criminal in adulthood while a physically challenged child may grow up into a talented adult or a genius.”

Hymavathi feels parents should try to give children born with deformities the best care and treatment rather than aborting the foetus. “The government also has a major role to play in this. The States and the Centre should ensure proper infrastructure, care centers, trained teachers and nurses for special children right from birth and take initiatives for educating and rehabilitating them. If governments take up this responsibility, more parents will be encouraged to keep such children rather than eliminating them from the womb fearing societal stigma and the burden of bringing up such kids,” she says.

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