We recently celebrated our daughter’s marriage, a life-affirming ritual made all the more joyous by being able to reunite with extended family and friends following an endless COVID-induced hiatus. The wedding took place just a few weeks before the U.S. Supreme Court’s overturning of Roe v. Wade, which had established a constitutional right to abortion for about 50 years.
The near coincidence of the two events left us shaken. It underlined yet again something that we had discussed repeatedly over the decades every time a news report announced another challenge to abortion: Our lives would have been unalterably different if we had not had access to abortion services. In fact, it was the ability to access safe abortion when we needed it that eventually enabled us to become the proud parents of a healthy son and daughter.
In our case, choosing to have abortions was the culmination of an arduous and painful process in which we had to endure the disappointment of losing longed-for children not once but twice. And as zealous Republican state legislatures outdo themselves in a rush to enact draconian legislation that, in some cases, will prohibit all abortions, we are deeply worried about the implications for people whose route to becoming parents involves a high-risk pregnancy of any kind.
After Miriam became pregnant for the first time in 1985, we had routine genetic screening when she was already 11 weeks along. The results, to our astonishment, revealed that we are both carriers of the genetic variant that causes Tay-Sachs disease, an incurable disorder that results in the destruction of nerve cells in the brain and spinal cord. Genetic mutations in the HEXA gene on chromosome 15 disrupt the formation of the lipid metabolizing enzyme beta-hexosaminidase A, resulting in the toxic buildup of a fatty acid compound called GM2 ganglioside inside nerve cells.
The somewhat rare disease is most closely associated with Eastern and Central European Jewish communities, but it is also found among French Canadians, the Old Order Amish of Pennsylvania, the Cajuns of southern Louisiana and even some people of Irish descent.
A child with Tay-Sachs disease can appear radiantly healthy as a newborn but begins an inexorable decline by six months. Basic motor skills fade. The infant loses any ability to turn over, sit or crawl. The progression continues with seizures and loss of vision, hearing, mental functions and overall responsiveness. These children usually die by the age of five.
If both parents are carriers of the defective mutation, they have a 25 percent chance of having a child who is affected by the disease. Sadly for us, genetic testing of the fetus revealed that it was indeed affected. We both absorbed the news of the positive test result with an engulfing sense of grief and disbelief. Given the prognosis, we had no doubt that continuing the pregnancy would be an act of cruelty and recklessness that would inflict needless pain and suffering on the child and result in enormous strain on us.
For Miriam, the horror was particularly acute. As a teenager, she had watched as her brother and his wife were taken by surprise by the birth of two children with another fatal genetic disorder for which there was no genetic testing. That experience precipitated severe family disruptions and subsequent stress-related health crises for the two parents.
For us as a couple, the combination of genetic testing and access to abortion allowed us to avoid having a child who would suffer tremendously and who would never make it to the first day of kindergarten. If we had given birth to that first child, the knowledge of their pain and our grief made it certain that we would have never tried a second time. What Roe v. Wade gave us was options—an assurance of compassionate and safe medical care that preserved Miriam’s ability to successfully bear two children.
After that first pregnancy, we went on to have a son and a daughter—punctuated by another Tay-Sachs pregnancy in between. Our son and daughter are healthy, and both lead productive lives. Our son Benjamin is a physician who battled the first wave of COVID, and our daughter Madeleine is a digital video producer at CNN who has covered stories ranging from mass shootings to the profile of a comedian who took her act to a coronavirus hotel. Neither would have been born without our being able to decide that we did not want to proceed with that first pregnancy.
Antiabortion advocates talk about the sanctity of life. But our experience is also a celebration of life. The summers the four of us spent in remote regions of Quebec, the trips to game reserves in Africa near Miriam’s South African birthplace, the Bar and Bat Mitzvahs, the weddings and the births of my son’s two children would never have made it into photo albums and personal memories if we would have initially gone through the trauma of giving birth to a severely disabled child.
This all happened more than 30 years ago, and even now it is painful to recall and relive the trauma of that period. Thankfully, the ordeal has been mitigated by the joy and satisfaction of two wonderful children. Everyone in the U.S. should have the options that we had. It should be assumed that they are a basic right. Yet the Supreme Court has now all but denied that.
We live in New York City, where a lighted billboard on a busy thoroughfare reassures residents of the state’s unwavering commitment to abortion rights. But that is not the case in a place like Texas, where a current six-week ban (likely to soon be followed by a near-total ban) would render moot the option of even an early prenatal diagnostic test such as chorionic villus sampling, which is typically administered at 10 weeks or later.
We are both haunted and distressed by the certainty that there will be prospective parents like us who will be denied the compassionate and safe care that Miriam received decades ago, procedures that did not compromise her reproductive health and that enabled us to weather the trauma and move ahead to raise a family. In coming years, we hope that the Supreme Court’s fatally flawed decision will be nullified by future action from Congress and the U.S. president.
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.
