On the cover of New York magazine this month is an eye-popping headline: “The Son I Adore Is The Son I Shouldn’t Have Had.” The accompanying photo features a gorgeous blue-eyed toddler, looking over his mother’s shoulder straight into the camera. What kind of mother could possibly write such a piece and what could be her justification? New York spent thousands of words giving the mother, Jen Gann, the space to try to explain why she filed a “wrongful birth” suit against her midwives for not disclosing test results that indicated an elevated risk of her child being born with cystic fibrosis.
Having a child born with a terminal, excruciating illness is basically every parent’s nightmare, and one I wouldn’t wish on my worst enemy. I cannot imagine the pain both mother and son have had to endure battling such an illness. Growing up, I remember my parents telling me whenever I got hurt or sick that they wished they could take it away and take it on themselves. I didn’t believe them; how could I possibly have understood that the love a parent has for their child runs so deep they would rather be the ones getting stitches or the flu? When you have a child that understanding develops overnight. Which is why a cover story about a mother wishing her son were never born is so surprising a statement, clearly meant to draw attention.
But attention to what? The picture Gann paints is clearly a life filled with pain, anxiety and constant medical treatments; hours a day are spent caring for her toddler son. There is no question that her son, Dudley, along with the rest of the family, would be living more rich and full lives were he not born with cystic fibrosis. But would their lives be as rich without him at all? That’s the disturbing question. The basis of Gann’s suit is the fact that when she was tested for genetic markers for cystic fibrosis and other diseases during her eight week prenatal appointment, the results of those tests were never disclosed to Gann and her husband. The piece continues:
“A French study found that 95 percent of people with a prenatal diagnosis of cystic fibrosis chose to terminate,” says Gann on writing this story. “These decisions were made in private, based on medical information communicated by care providers. Mothers like me were not given the chance to make that decision in private—we were not given the chance to make that decision at all. To me, terminating would have been the merciful choice. I know not everyone feels that way, but I do. I wanted to write about wrongful birth because of them, those who believe I should have no legal recourse against my negligent medical providers. Not all states allow wrongful birth as a legal course of action. My family is lucky New York does.”
Gann views it as merciful to end her child’s life in the safety of a mother’s womb. Considering we can easily view a baby’s humanity on ultrasound at that stage of life, that’s a shocking view, albeit one unfortunately shared by many.
What is perhaps most disturbing about the story is the fact that a false choice was presented to its audience: abortion or living with cystic fibrosis. The “cure” for cystic fibrosis presented in the article is prenatal death (abortion) for children of parents who are carriers of the gene. But Gann never discusses the fact that she could have been tested for cystic fibrosis and numerous other genetic markers before she even became pregnant. Some doctors and genetic counselors argue that pre-pregnancy genetic testing for couples should be as common as taking folic acid.
After something tragic happens, many have the impulse to do something. Unfortunately, Gann’s impulse was to normalize “wrongful birth” suits for those parents who wish they had aborted their children. What would have been a better use of her platform in terms of saving families from the same fate would have been to popularize genetic testing before pregnancy, and encourage insurance companies to cover the costs of carrier screening (some do, others won’t until an actual pregnancy is achieved). Because of the prevalence of genetic diseases in the Jewish community, for example, pre-pregnancy genetic testing is common among Orthodox families at the time of marriage. Gann’s story was a missed opportunity to promote the practice among mainstream Americans. Had her family had these tests before pregnancy, they could have avoided the prospect of abortion altogether, and instead tested eggs and sperm in a lab before they were ever joined, through the process of IVF. This process isn’t just for those who suffer from infertility, but is also an option when both members of the couple are carriers for devastating genetic diseases like cystic fibrosis. Gann’s story is a reminder that our future need not be one of dystopian “wrongful birth” suits. It could be one where couples hoping to start a family get the pre-pregnancy information they need to have healthy children.