Even after years of education, training and experience as an obstetrician/gynecologist, I am never prepared to deliver the news that a pregnancy is abnormal. There is no good way to tell a pregnant woman — a woman who may already be wearing maternity clothes, thinking about names and decorating the nursery — that we have identified a fetal anomaly that can lead to significant, lifelong disability or even her baby’s death.
In such situations, physicians have two responsibilities. First, we must always be supportive of the mother or family who has suddenly been confronted with the loss of an imagined ideal pregnancy and child. And second, we help them understand that they have options, one of which is the termination of the pregnancy.
Unfortunately, that’s no longer the case here in Indiana. A new law signed by Gov. Mike Pence (R) punishes doctors if they perform abortions for women because of their fetus’s race or sex, or after a diagnosis of disability. Indiana’s state government is intruding on the doctor-patient relationship at one of its most vulnerable, sensitive times. Which means that not only does the new law encroach on women’s rights to control their own reproduction, it is also bad medicine.
As a mother as well as a doctor, I am acutely aware of the intensity and fear of the unknown inherent in pregnancy and childbirth. Indiana now expects women who live here to experience them without trusting their doctors’ knowledge and with strict limits on how doctors may treat patients — limits driven not by science or research, but by politics.
Supporters of the new law, such as Pence, say the measure “affirms the value of all human life.” And yes, some women do choose to carry abnormal pregnancies to term. I am honored to care for them and their babies. I have held and comforted babies as they died, because their mothers were too grief-stricken to bear it. I have cried with families as we watched their babies breathe their last breath.
Not every woman can handle such horror. In the United States, abortion is an ethical, safe, appropriate and — with the exception of North Dakota and Indiana — legal medical option in the case of severe anomalies, one that spares women the emotional pain of stillbirth or the loss of an infant. That loss is dismissed and diminished by this law and by those who support it; the law doesn’t save babies, it just forces a horrific fate onto both mother and child. It includes an exception only for termination of babies who would die within three months of being born, as if three months is enough time to justify forcing women to take on the risks of carrying a pregnancy to term and delivering a baby, only to watch it die.
And that exception would still require women to carry to term pregnancies with some severe and disastrous genetic abnormalities, all of which I’ve seen lead women to choose abortions rather than deliver babies who suffer.
Trisomy 13, or Patau syndrome, can leave babies with one eye, no nose, kidney defects and a spinal cord without skin covering it. Most are stillborn, but of those that are born alive, more than 80 percent die before they turn 1, only surviving that long after cardiac, spinal and other surgeries.
Spinal muscular atrophy, one type of which is Werdnig-Hoffman disease, is characterized by rapid neurologic degeneration, causing an infant to die within a year because of respiratory failure. This disease doesn’t have ultrasound findings, nor would it be found on any routine prenatal screening, so the only way one would know to test for it is if the parents have already had a child born with it. With such a poor prognosis, the parents may have already buried that child. Indiana would now force those parents to go through the same grief again if the disease was detected in a subsequent pregnancy.
Duchenne muscular dystrophy is a sex-linked disease that causes muscle degeneration starting around 2 years old leading to profound weakness, a need for braces and wheelchairs by age 10, and eventual paralysis. This disease occurs almost exclusively in boys and carries a life expectancy of less than 25 years. It can’t be detected with any existing prenatal test. But because Indiana’s law also prevents termination of a pregnancy for reasons of gender, parents who already have a child with this horrible disease, and who find out they’re expecting a son, will have a 50 percent chance of their newborn also having the disease. And they won’t be able to do anything about it, except hope that they won’t have to watch both sons die.
Preventing women with these fetal diagnoses from choosing abortion forces them to see their children die a slow, painful, premature death. My colleagues and I are already asking one another whether we should even offer prenatal screening now that there’s no legal choice to end a pregnancy because of the results.
Not all prenatally diagnosed disabilities are fatal, of course. Scientific advances can detect abnormalities with increasing accuracy, allowing families to decide whether having a child with a disability is right for them. Again, what is important is that they have the right to choose. That choice is not the radical outlier Indiana’s new law might suggest: Research suggests that women terminate between 60 and 90 percent of pregnancies diagnosed with Down syndrome. These decisions are made out of love and compassion, a seemingly obvious concept but one that bears emphasizing.
Families who choose to continue abnormal pregnancies and raise children with disabilities face incredible hardships. It can be challenging to determine the severity of the disability before birth, so preparation can be difficult. In families with limited incomes and restricted resources, these children may not receive the care and attention they deserve, again increasing their suffering. Pence says he’s shared “precious moments as governor” with such families, but he isn’t the one paying the medical bills, transporting the children to their many therapists and doctor’s visits, or missing work to serve as a caregiver.
Babies are not born either strictly “normal” or “abnormal”; there is a huge range of outcomes, and before this law, each woman carrying a fetus with genetic anomalies might make a different choice. For those mothers who will now be forced to deliver babies they might not otherwise have had — the babies “saved” by this law — Indiana sets aside no additional funding or services. These babies will require long and repeated hospitalizations, surgeries, office visits, physical and speech therapy, home nursing care and more. Rather than protecting life, the state has only prolonged suffering.
Some women may still be able to find a physician who can provide them with the abortion care that they need, but through what channels? Instead of mourning a much-loved baby, a woman in Indiana will either have to lie to her provider and say she never wanted to be pregnant, leaving out the critical medical information that actually prompted her decision, or her provider will have to agree to terminate her pregnancy without asking why, which is terrible care. Women who can afford it could travel out of state, away from their support systems, at great expense and additional stress. All of these options are inhumane treatment of a grieving mother.
The relationship between a pregnant woman and her doctor requires both trust and privacy. There is no room for legislators in the exam room, and there is no space for politics in medical decisions. I provide advice based on scientific evidence and clinical experience so that patients may make educated decisions for themselves. This is impossible if I am legally required to withhold appropriate treatment for a medical condition.
Women want what’s best for their families during this precious and precarious time. I became an OB/GYN because I love celebrating the birth of a baby and honoring the new life in the world. Instead, this law forces me to ignore my medical training and stand idly by while my patients suffer. This is not the care I want to provide, nor is it what my patients deserve.