Sarah and Mark Hall* spent hours giving depositions in the elegant conference room of their obstetrician’s lawyers. Again and again, their doctor’s lawyers asked them the same question while court stenographer sat ready to record their responses. The Halls knew what they had to say—there was no other way their lawsuit could proceed. Yes, they each said, swallowing their repugnance. Had I known that our daughter had a genetic disorder, I would have chosen abortion.
In 2010, while Sarah was pregnant with their daughter Ellie*, the couple was in the midst of a tumultuous time. Mark’s mother died suddenly. Compounding the couple’s grief, Mark’s mother’s death left the couple financially and legally responsible for his older sister Jennifer, who, due to an extremely rare configuration of her genome, has special needs.
Jennifer lives independently. While she has held jobs for short amounts of time, she has performed unevenly and now collects disability benefits. According to Sarah and Mark, she is 40 and has a developmental age of about 14. Jennifer has intense emotional fluctuations and her behavior can be very challenging. In 2008, Mark, who is non-disabled, discovered through genetic testing that he is a carrier of Jennifer’s syndrome. This means that any children he has might have a typical genome, or they might, like him, be symptom-free carriers. They also, however, might have either Jennifer’s syndrome or Syndrome Z. (This latter syndrome is rare enough to be identifying, so its name has been changed).
Mark was told by his geneticist that, given her genomic configuration, Jennifer was unusually verbal, mobile, and independent. If his child were to have Jennifer’s syndrome or Syndrome Z, the child likely would be significantly more cognitively and/or physically disabled. The geneticist also told them there would be a risk to Sarah in carrying a child with either syndrome. (With the caveat that I am not a geneticist, I have searched for data to suggest that Sarah herself would have been at greater risk, and have been unable to find any.)
So when Sarah was 16 weeks pregnant, she got an amniocentesis. The geneticist’s report was sent to their obstetrician’s office. Someone from their obstetrician’s office informed the Halls of the results over the phone. Ellie was “just like you,” Mark was told. That is, Ellie was a carrier, but would not be symptomatic. At a time when the rest of their lives were in no small upheaval, this result was a reassurance.
After she was born, Ellie developed typically for about six months. She smiled adorably and rolled over on cue. Then her development seemed to slow. She did not sit up, crawl, or walk. Her pediatrician became concerned about the size of Ellie’s head, and told the Halls that it didn’t seem as if Ellie’s brain was growing. The couple brought Ellie to specialist after specialist. Since all her doctors believed the amniocentesis demonstrated Ellie had a typical genome, however, no one suggested the Halls consult a geneticist.
The Halls describe that time of doctors, tests, and uncertainty as absolutely harrowing. “I couldn’t think of anything else but what was going on with my daughter,” Mark said. When Ellie was 18 months old, their pediatrician, now at a loss for other explanation, suggested they return to a geneticist. They all received further testing, and the Halls asked the obstetrician’s office for the geneticist’s report on Ellie’s amniocentesis. When Sarah received it, she was floored.
“I am not an expert in this. This isn’t my job. But I had read enough about genetics to know what it said,” said Sarah. The results, one simple line in karyotype notation, were clear. Ellie had Syndrome Z. The person who had phoned the Halls had, quite simply, misread the results. Their obstetrician’s office admitted the mistake, and a settlement is being negotiated.
Suppose, in the course of caring for you, your doctor makes a mistake. This alone is not enough to sue her. If you sue a healthcare provider for negligence or malpractice, you are required to demonstrate that the mistake the provider made actually caused harm. This is the problem facing the Halls and anyone else who receives a falsely reassuring result on a prenatal test. It’s not like the person who misread the amnio results caused Ellie to have Syndrome Z, nor did she exacerbate Ellie’s symptoms. So, then, what harm is really done?
In such cases, it is an established legal precedent in the U.S. that the only harm that can come of a falsely reassuring prenatal test is if the mother would have gotten an abortion had she known. Cindy Shapiro, a medical malpractice defense attorney in California who has no connection to the Hall’s case, said that the only way parents can win a lawsuit for a falsely reassuring prenatal test is to say that they would have had an abortion had they known. “The plaintiffs have to prove the causation aspect,” Shapiro told The Daily Beast. In at least one case, parents had to present a Do Not Resuscitate order they had signed for their son to prove that they really would have terminated the pregnancy.
It is a cruel quandary for parents and children alike—even crueler if their child’s disabilities are such that the child can understand what her parents have said about her when she’s older.
In the case of a falsely reassuring prenatal test, there are two possibilities for a lawsuit against a health practitioner. The first is what’s known as “wrongful birth” lawsuit. The parents are the plaintiffs in a wrongful birth suit, and they sue for the harm that their child’s existence with disability has caused them. Another kind of suit is called “wrongful life.” That is a suit brought on the behalf of the child, rather than the parents. These suits assert, basically, that the child herself was harmed by the very fact of her own birth.
In one of the first cases to assert wrongful life, 1967’s Gleitman v. Cosgrove in New Jersey, the child plaintiff was intellectually disabled. The mother had had rubella during pregnancy, and was falsely reassured by her doctor that the virus could not result in disability to her fetus. The judge dismissed the child’s suit due to the difficulty, if not incoherence, in determining “the difference between his life with defects against the utter void of nonexistence.” Due to this difficulty, wrongful life suits are only permitted in three states. About half the states in the U.S. permit wrongful birth suits.
Opposition to both wrongful birth suits and wrongful life suits comes from an unusually wide array of the political spectrum. Pro-lifers unite with disability advocates in rejecting what wrongful birth and wrongful life suits communicate about people with disabilities: that their lives are not worth living. And worse, that their very existence is actually harmful to themselves or someone else.
Parents who bring such suits are routinely vilified. Shapiro told The Daily Beast that wrongful birth and wrongful life cases are incredibly difficult to win for precisely this reason. Her law firm represents health care providers, and has never lost either a wrongful birth or wrongful life suit when a provider has given a falsely reassuring result on a prenatal test. (California is one of the three states that permit wrongful life suits.) Shapiro has discussed cases with juries after trials, and they routinely express their disapproval of the parents for saying such a thing about their own child.
What the vilifiers may not realize is just how much the parents do not want to bring such a suit. The Halls sued for wrongful birth, which in their state is the only suit they could bring. They could not sue for emotional distress, damages for which can only be won in a wrongful life suit. It is indeed the case that they would have terminated the pregnancy. Now, however, they adore their daughter. Ellie is a captivating, laughing child with twinkling eyes. She looks uncannily like Mark, with a crop of soft dark curls. She is now three-and-a-half. She walks, albeit a little uneasily, and speaks in two-word sentences. By the standards of Syndrome Z, her developmental progress is remarkable.
I too have a child with a genetic syndrome and am all too familiar with the feelings that the Halls have, and that so many of us who are parents of kids with disabilities have. I wouldn’t have asked for this, and goodness knows it’s really rough sometimes. But now that my child is here, I wouldn’t give her up for anything. Isn’t this true not only about children with disabilities, but so many aspects of our lives? Some of what we value the most arises from moments of pain. A Wrongful birth suit is far too blunt a tool to acknowledge such complexities of life.
The Halls hate that they said what they did about their daughter. “That’s a shitty thing to say about a person—basically that you don’t deserve to live and breathe on this earth,” Mark explained. Sarah added, “Who wants to say ‘I wish this child wasn’t here’? What kind of mother is going to feel okay saying that?”
Of course, many will argue that they had a choice not to sue at all. However, telling them they could have shut up and put up is patently unfair. They are “not litigious people,” as Sarah said, but they felt they had a right to sue. The office should not be able to treat a matter of such importance with such negligence without any redress.
Parents who bring wrongful birth suits seem to face a burden faced by no other plaintiffs in medical malpractice cases. Shapiro agreed that, at least in California, if a healthcare provider misses a tumor in an MRI, then the plaintiff does not have to prove that he would have followed a given course of treatment. We are always, of course, free to refuse medical advice, and people regularly refuse treatment for various reasons. But the brain tumor plaintiff does not have to say what he would have done. Shapiro told The Daily Beast that most other cases do not determine what the actual plaintiff would have done, but rather what a “reasonable person” would have done. The burden on plaintiffs in wrongful birth cases “is unique, and is inconsistent with other types of malpractice cases,” she said. The plaintiff in the brain tumor case just has to prove that he would have had a greater than 50 percent chance of survival had the doctor diagnosed it at that MRI, and as a result now has a less than 50 percent chance of survival.
The Halls would far rather have sued for emotional distress. The original reasoning behind the inability for parents to sue for emotional distress seems to be that parents of children with disabilities often end up loving their kids anyhow. Of course this is true, but it hardly changes the fact that it can be extremely emotionally distressing to have a child diagnosed with severe disabilities, as those of us who adore our kids with disabilities will recognize all too well.
Sarah and Mark certainly have experienced emotional distress. Both of the Halls were working on their dissertations, but neither has finished. Therapies for Ellie take up far too much of their day. They stated repeatedly how lucky they are, and that things are not nearly as bad for them as for so many other people. The intensity of caregiving for Ellie, however, has put a strain on their friendships, professional lives, and marriage. Sarah said with a rueful wittiness, “I now say that I’m broken. Mark comes home and I say, ‘I’m broken right now, and Ellie broke earlier this afternoon. How are you?”
Parents of children with disabilities should not face a unique burden to redress their wrongs. Of course, negligence always requires proof of harm caused. Shapiro suggested that the “reasonable person” standard be used in such cases, although then the problem remains that the law still seems to state that someone’s very existence is harmful.
The harm should not be the child’s existence, but the parents’ emotional distress or lack of informed consent. No matter which way is chosen, it seems clear that not only do wrongful life and wrongful birth suits communicate a horrible and grossly false message about people with disabilities, they also put a patently unfair burden on parents.
*Names have been changed.