Imagine having 15 miscarriages.
Maybe you can shrug off the first one or two and keep trying to have children, to create a family. But soon every positive pregnancy test brings a sense of dread, of sad inevitability. Your body becomes your enemy.
In 1998, my group at Saint Barnabas Medical Center in suburban New Jersey was part of a team that developed a way to test for a genetic variant called a translocation, a swapping of parts of one chromosome with a different chromosome. For the most part, people with genetic translocations are completely fine; they have all of the same genes as anyone else. The problems arises when their cells have to split their chromosomes to make eggs or sperm, most of which have too much or little of some of the translocated genes. These unbalanced sperm and eggs create unbalanced embryos, which rarely develop past the second trimester.
By using fertility drugs to mature a number of eggs at once and fertilizing all of them, my colleagues and I were able to identify the small number of normal or balanced embryos in people with genetic translocation. We could then transfer them one by one, helping create families that would otherwise never have happened. This discovery has helped create more families than I could possibly count.
You can’t do this by fertilizing one egg at a time.
The prevalence of balanced translocation carriers is 0.25%. There are 5 million people in Alabama. That equates to 12,500 couples or 25,000 people who can have children with IVF who otherwise could not.
But now, a bizarre court case led to an unthinkable ruling in Alabama that effectively limits IVF to one fertilized egg at a time, using made-up scientific language to mask a religious ruling. In response, the University of Alabama at Birmingham hospital system has halted crucial elements of IVF treatment involving fertilized embryos. More providers are following suit.
What happened? As University of California-Davis law professor Mary Ziegler described it to NPR, “in 2020, a hospital patient … entered the place where frozen embryos were stored, handled some of the embryos, burned his hand, dropped the embryos and destroyed them.” Three couples whose embryos were allegedly destroyed have sued. “They had a variety of theories in the suit, one of which was that the state’s ‘wrongful death of a minor’ law treated those frozen embryos as children or persons. And the Alabama Supreme Court agreed with them in this Friday decision,” Ziegler explained.
Did a hospital patient really enter an unlocked embryology laboratory, find the tanks in which frozen embryos were stored, plunge an ungloved hand into liquid nitrogen (-320 degrees Fahrenheit!), grab several of the straws in which the embryos were suspended, lift the embryos out of the tank, and only then feel his hand burning from the cold?
If you’ve been around IVF labs, the story sounds pretty implausible. But even if it’s true, why does assigning blame and responsibility for this serious but isolated violation have to rob 25,000 people of the opportunity to have children? Why did the Alabama legal system feel compelled to inflate the adjudication of this serious but local incident into a policy that restricts everyone?
Will other states follow Alabama? Are the 75,000 translocation carriers in Texas next in line to be told that they cannot have children? Does each state have an obscure part of its legal code that can be used to similarly reverse-engineer a way to prohibit IVF?
The same procedure that lets us find the genetically balanced embryos produced by a couple affected by a translocation can be used to detect the genes that cause genetic diseases like sickle cell anemia, cystic fibrosis, or spinal muscular atrophy. Maybe in Huntsville or Mobile or Birmingham there is a couple who lost a 2-year-old to a fatal genetic disease, and either 25% or 50% of children they conceive is at risk for the same fate. How many families stop trying because they cannot face the possibility of seeing another child suffer the same way?
Does the logic of the Alabama embryo case remove the ability to choose to have a child free of a fatal disease? It would appear so. The court ruling says, “The central question presented in these consolidated appeals, which involve the death of embryos kept in a cryogenic nursery, is whether the Act contains an unwritten exception to that rule for extrauterine children — that is, unborn children who are located outside of a biological uterus at the time they are killed.”
Cryogenic nursery? Extrauterine children? The language of the Alabama ruling invents new terms and uses them as if they’ve been around forever, as if everyone knows exactly what they mean, that they represent the truth. But if a nursery is where we place our young while they grow, it cannot be where we arrest cell division with cryo. A child cannot be extrauterine without being intrauterine first. At least the concurring opinion, from the court’s chief justice, is honest about the intent, saying, “Even before birth, all human beings bear the image of God, and their lives cannot be destroyed without effacing his glory.” This is not about science or law.
After four decades and 12 million babies, why is the legality of in vitro fertilization suddenly at risk? The procedure is more effective and safer than it has ever been. We don’t see IVF triplets or quads anymore, and our medication protocols have nearly eliminated the risks of overstimulating the ovaries. Denying patients the opportunity to have a family with IVF is indefensible, and making it unlawful for my colleagues to provide best practices standard care is unjustifiable. Infertility, pregnancy loss, and having children at risk for fatal disease is as painful in Alabama as anywhere else.
We don’t have to make up new terms to describe the pain of chronic infertility, the emptiness of recurrent pregnancy loss, or the need to protect children conceived now from a disease that may have plagued a family for generations.
No one should have to experience 15 miscarriages.
David Sable is an obstetrician-gynecologist, reproductive endocrinologist, health care fund manager, and an adjunct in the department of biological sciences at Columbia University.