A Wrongful Birth?
By ELIZABETH WEIL
March 12, 2006
The New York Times
Like most American
women who give birth to a
severely handicapped child, Donna Branca became pregnant with A.J. well
before the age of 35. Had she been older, her doctors would almost
certainly have recommended amniocentesis to screen for genetic
disorders. But she was 31, so they did not, despite the fact that she
had an unusual pregnancy. Branca bled during her first trimester, a
possible indication of birth defects, and at her midterm sonogram, when
she was 20 weeks pregnant, her fetus looked smaller than it should have
based on when her doctors originally presumed she conceived. Branca had
not gained much weight, either, but her doctors — whom she is barred
from identifying, by a legal settlement — saw no cause for alarm.
"Looking back now, of course, it's easy to say I should have asked more
questions or maybe been a little more concerned," she told me last
fall, s
On April 22, 1999, when Branca was 28 weeks pregnant — four weeks past
the legal window for terminating a pregnancy in New York — she saw her
regular doctor (for what would be the last time) and was reassured that
her baby was fine. But three weeks later, while on vacation on the
Jersey Shore, Branca began to bleed again. Her husband, Anthony, drove
her to the emergency room at Southern Ocean County Hospital in
Manahawkin, N.J. Anthony Branca, like his wife, is compact and
mild-mannered. When the obstetrician arrived, the doctor got out a tape
and measured Donna's belly, a standard procedure to gauge a fetus's
size. Although such measurements are a routine part of prenatal
medicine and require only a few seconds, Donna had never had her belly
measured. The obstetrician on duty that day asked Donna if she had had
any prenatal care at all. Then he told her, based on his calculations,
her fetus appeared to be only 24 weeks old, not 31.
An emergency sonogram confirmed that the fetus was indeed abnormally
small, and an amniocentesis later performed at Westchester Medical
Center in Valhalla, N.Y., revealed much worse news: Donna Branca's
fetus had both a gene duplication and a gene deletion on his fourth
chromosome. (It was not until after birth that it would became clear
that her baby had Wolf-Hirschhorn syndrome, which commonly includes
mental retardation, physical disfigurement, inability to speak,
seizures and respiratory and digestive problems.) After two weeks of
bed rest, during which doctors tried to delay labor, Donna delivered
A.J. Branca on June 11, 1999, about six weeks before her due date. He
was 15 inches long and weighed two and a half pounds, and he didn't cry
when he came out. "One of the first things the attending doctor said to
me," Donna told me, "was, 'It's not hereditary, so you should just have
another child right away."'
What happened next — the years in which the Brancas came to love A.J.
deeply and also to file a multimillion-dollar lawsuit claiming that
Donna Branca's obstetrician's poor care deprived her of the right to
abort him — sheds an uncomfortable light on contemporary expectations
about childbearing and on how much control we believe we should have
over the babies we give birth to. The technology of prenatal care has
been shifting rapidly: sonograms became standard in the 80's; many new
genetic tests became standard in the 90's. Our ethical responses to the
information provided has been shifting as well. As in many other
realms, from marriage and its definition to end-of-life issues, those
ethics and standards are being hashed out in the courts, in one lawsuit
after another. And what those cases are exposing is the relatively new
belief that we should have a right to choose which babies come into the
world. This belief is built upon two assumptions, both of which have
emerged in the past 40 years. The first is the assumption that if we
choose to take advantage of contemporary technology, major flaws in our
fetus's health will be detected before birth. The second assumption,
more controversial, is that we will be able to do something — namely,
end the pregnancy — if those flaws suggest a parenting project we would
rather not undertake.
The practice of terminating specific pregnancies, as opposed to
aborting pregnancies so as not to have a child at all, is seldom
discussed in its baldest terms. It is also poised to rise. Just this
past November, scientists at Columbia University published a major
paper in The New England Journal of Medicine on the effectiveness of
new, noninvasive techniques for screening for Down syndrome in the
first trimester, when the decision to terminate will most likely be
more common and, some argue, more humane. In in vitro settings, a new
technology called P.G.D. — preimplantation genetic diagnosis — allows
doctors to test for genetic defects days after fertilizing an egg in a
petri dish. Perhaps most important, the number of prenatal genetic
tests is increasing exponentially — it jumped from 100 to 1,000 between
1993 and 2003 — and no regulations yet guide parents and doctors about
fair reasons for terminating or going forward with particular births.
Should it be O.K. to terminate a deaf child? What about a blind one?
How mentally retarded is too mentally retarded? What if the child will
develop a serious disease, like Huntington's, later in life? According
to one reproductive legal scholar, Susan Crockin in Newton, Mass., "As
reproductive genetics opens up new possibilities, we should expect to
see more of these cases, and we should expect to see more novel issues."
At present, courts in about half the states recognize wrongful birth as
a subset of medical negligence or allow lawsuits under the more general
malpractice umbrella if a doctor's poor care leads to the delivery of a
child the parents claim they would have chosen to terminate in utero
had they known in time of its impaired health. In some of these states,
like New York, where the Brancas' case was tried, emotional damages —
compensation for the distress incurred by having an impaired child —
cannot be recovered. No matter the legal context, terminating a wanted
pregnancy is no one's first choice, but for the time being at least,
when faced with a fetus that will become a severely handicapped child,
all the choices are bad. At this moment, we are fairly adept at finding
chromosomal flaws and horribly inept at fixing them. There is no
chemical or surgical remedy if you find out your child-to-be has cystic
fibrosis, fragile X, Down syndrome, Tay-Sachs, anencephaly — the list
goes on and on. As Leon Kass, former chairman of the President's
Council on Bioethics, has noted, in prenatal cases, often the only way
to cure the illness is to prevent the patient.
he first significant wrongful-birth lawsuit involving a disabled child,
Gleitman v. Cosgrove, reached the New Jersey Supreme Court in 1966. One
plaintiff was the child's mother, who had contracted rubella early in
her pregnancy in 1959. Worried, she consulted her doctor and was
assured that her unborn baby would be fine, despite the common
understanding that rubella early in pregnancy can lead to birth
defects. The baby in question was born with "substantial defects. . .in
sight, hearing and speech." Interestingly, the court recognized the
physicians' failure as well as the parents' anguish and attendant
financial burdens although it still decided in favor of the defendants,
in part, it seems, because it did not want to enter the ethical thicket
inherent in finding for the parents. "A court cannot say what defects
should prevent an embryo from being allowed life.. . ." the opinion
reads. "Examples of famous persons who have had great achievement
despite physical defects come readily to mind, and many of us can think
of examples close to home.. . .The sanctity of the single human life is
the decisive factor in this suit in tort. Eugenic considerations are
not controlling. We are not talking here about the breeding of prize
cattle."
By 1978, however, when the next significant wrongful-birth case was
decided by a higher court, the 1973 Roe v. Wade decision had
established a woman's right to choose — that is, to terminate a
pregnancy. The new case, Becker v. Schwartz, involved a geriatric
mother (a medical term for a pregnant woman over 35) who was not
advised by her doctor that her advanced age put her unborn child at
greater risk for birth defects. Her child was born with Down syndrome,
and shortly thereafter the mother sued. This time, the New York State
Court of Appeals found in favor of the family, declaring it had the
right to seek financial damages for the added cost of raising a child
with a disability. The court, however, refused to allow the claim of
emotional damages. It did recognize the family's suffering, but
reasoned it "may experience a love [for their child] that even an
abnormality cannot fully dampen."
This paradigm — awarding financial but not emotional damages — has
become the standard in contemporary wrongful-birth lawsuits. Only a few
states — including Georgia, Kentucky, Minnesota, Michigan and Utah —
have barred wrongful-birth cases through legislation or case law.
(Conversely, wrongful-life lawsuits in which disabled children sue
doctors for the suffering they are incurring by being alive have
generally been rejected. These arguments come down to "better off
dead," and courts have claimed it is impossible to weigh suffering
versus nonexistence.) Yet the ethical thicket that the first court
feared is as thorny as ever. We may not want to give birth to disabled
children, but at the same time we do not want to see ourselves as
reproducing in a way that calls to mind prize cattle.
The moral quandary we find ourselves in pits the ideal of unconditional
love of a child against the reality that most of us would prefer not to
have that unconditional-love relationship with a certain subset of
kids. "I think the reason that this topic is as loaded and painful as
it is," says Adrienne Asch, a professor of bioethics at Yeshiva
University in New York, "is that prospective parents want to think that
they are open to loving whomever comes into their families, and they
don't want to think that they aren't." Asch is one of this country's
most outspoken advocates for disability rights and against the
"automatic assumption" that prenatal testing that reveals disability
should lead to abortion. It is her observation, shared by many on both
the left and right, that prenatal testing "is not a medical procedure
to promote the health of the fetus. It is a procedure to give
prospective parents information to decide whether or not to eliminate a
possible future life."
The reasons to oppose termination are both obvious and subtle and not
necessarily tied to abortion views in general. (The question of
abortion rests on a single issue: is it O.K. to destroy a potential
life? Termination involves an infinite number of heartbreaking queries
that boil down to this: what about this life in particular?) Some argue
that our desire not to raise impaired children is based on prejudice.
Others claim that a choosy attitude toward fetuses brings a consumerist
attitude toward childbearing and undermines the moral stature of the
family. Still others maintain that the act of terminating impaired
children drags us into a moral abyss — or its opposite, that raising
children with impairments increases our humanity.
I had to face these very questions in my own pregnancy two years ago. I
was 23 weeks pregnant with our second child when my husband and I were
told that our unborn son had contracted cytyomegalovirius, or CMV, a
virus that if contracted by the mother for the first time while she is
pregnant and is passed along to her fetus can lead to serious birth
defects. Most likely our child would be deaf, blind and have serious
mental retardation — a doctor friend told me that this prognosis could
make a child with Down look like a walk in the park — but no one could
tell us for sure what our unborn son's health would be like. What is
more, no good studies existed because most of the women in the samples
terminated before birth. The uncertainty was awful: weren't we supposed
to be given solid information on which to base a decision? In lieu of
that, we were offered a sonogram riddled with anomalies, a 20-something
genetics counselor and terrible odds. We tried to take solace in the
fact that our older daughter had never picked up on the fact that there
was a baby in her mother's belly. We did what seemed right at the time:
we aborted.
David Wasserman, a bioethicist at the University of Maryland, wrote a
paper with Asch titled "Where Is the Sin in Synecdoche?" in which the
two argue that prenatal testing is morally suspect because the system
leads people to reduce fetuses to a single trait, their impairment.
"Since time immemorial people have felt fear and aversion toward people
with impairments, but these tests legitimize those fears," Wasserman
says. Parenthood, according to Wasserman, is and should remain a gamble.
Opposing this, of course, is the plain fact that a healthy newborn is
the best outcome — what every parent wants. No reasonable person would
choose sickness over health, and we seem to have the ability to choose.
So how to proceed? Much hand wringing goes on about a sci-fi
"Gattaca"-like future in which terminating kids with Down syndrome
leads to selecting for only highly intelligent, physically powerful
blue-eyed children. Yet in truth we are not at risk of creating a
society of such supposedly perfect human beings any time soon. "There's
enough evil and caprice to always assure there will be disabilities,"
says Laurie Zoloth, director of the Center for Bioethics, Science and
Society at Northwestern University. "But could there be fewer? When
people worry about curing too many things, I'm always glad that
bioethics wasn't around when people were thinking about infectious
diseases or polio or yellow fever."
The Brancas have little way of making sense of how Donna's primary
doctors failed to apprehend that her pregnancy was not going well
except to assume that they saw too many patients, believed her baby
would be fine because she was relatively young or jumped to conclusions
about the Brancas' ideas about abortion based on the gold cross that
Anthony wore around his neck. Whatever the case, A.J.'s first days and
weeks were a horrendous roller coaster. One of the earliest, hardest
moments was when a doctor approached the Brancas with a D.N.R., or Do
Not Resuscitate, order. They struggled with the choice, but decided to
sign.
During A.J.'s first few months, he was hooked up to oxygen tubes to
help him breath and to feeding tubes to help him eat, and he lived in
an incubator to regulate his temperature. He remained hospitalized for
17 weeks. Donna spent every day by his bedside, usually returning home
to eat a takeout dinner with Anthony and then driving back to the
hospital again with her husband. During this time, the Brancas had to
decide whether to institutionalize A.J. or raise him at home.
Wolf-Hirschhorn syndrome is so rare that virtually every doctor who
counseled the Brancas could tell them no more than what the Brancas
gleaned from a single study they found on the Internet. The Brancas
were also cautioned that severely disabled children are often easiest
on parents both emotionally and physically when they are infants, as
all infants are wholly dependent on their parents.
When A.J. was discharged in October 1999, four months after his birth,
he was still "medically fragile," he needed round-the-clock care and he
spent nearly as many calories trying to eat and regurgitating his food
as he managed to keep down in his stomach. The Brancas feared that if
they took A.J. home, he might not make it through his first year. With
the encouragement of their families and A.J.'s doctors, the Brancas
placed him at St. Margaret's Center for Children in Albany.
"It was just awful," Donna told me, tears streaming down her otherwise
composed face as she recently described the experience of dropping him
off years ago. "Anthony and I just sat in the car and cried for hours.
I was a mother, and yet I didn't feel like a mother. It didn't seem
natural. As a mother, you have this feeling: no matter what, you're
supposed to care for your child."
Back home in Orangeburg, Anthony and Donna tried but failed to find
solace in the Catholic Church. (Neither had been churchgoers before,
though both were raised in religious families; both identify with
Catholicism culturally but say that families at times need more leeway
than the church allows on family-planning issues.) They also started
hanging around their single friends because they couldn't bear hearing
about children. When A.J. was 5 months, Donna returned to work in
marketing for I.B.M. part time because, she says, "I just needed to
think about something else, or I was going to have a nervous
breakdown." Around this time, too, the Brancas started considering
legal action. Anthony's mother, a court stenographer, encouraged Donna
to requisition her medical records, and when Donna showed them to
Dennis Donnelly, a medical malpractice lawyer in New Jersey, he
immediately took the case.
Donnelly cautioned the Brancas that her doctors probably wouldn't
settle — about 75 percent of medical malpractice cases are found in
favor of the defendant — though he also told the Brancas that if they
won, they should expect a settlement in the millions. For the trial, he
prepared a video called "A Day in the Life of A.J.," since Donna and
Anthony did not want A.J. to take the stand. The trial started in June
2004 and lasted three weeks. By then, Anthony and Donna had 2-year-old
twins. In court, Donnelly asked the Brancas' doctors why they had never
measured Donna's fundal height, particularly in light of her low weight
gain, why they had been unconcerned with her first-trimester bleeding
(a possible indication of chromosomal damage) and why they had not done
any follow-up testing after her 20-week sonogram suggested the fetus
was small. He also showed the video in which the jurors could see A.J.
hooked up to a feeding tube and taking endless meds.
The defense, for its part, tried to insinuate that Donna herself had
declined to seek follow-up testing and that even if she had sought such
testing, the results might not have arrived in time for her to abort.
Furthermore, they argued that the Brancas would not have terminated.
(Donnelly used the signed Do Not Resuscitate order to argue that the
Brancas would, in fact, have terminated.) The doctors conceded that the
falloff in Donna's due dates should have raised a "red flag" and that a
follow-up sonogram after her 20-week sonogram would have showed a
further deterioration in fetal size and weight. Donna's doctors also
had little recollection of Donna as a patient, so they could speak only
about their practice in general and of her case based on her records.
Separately, both Donna and Anthony told me that they believed they
might not have sued had Donna's doctors just called to apologize. "They
never felt any remorse," Donna said, "never called me after my son was
born to say, 'I'm sorry this happened."'
The jury deliberated for two hours and found the doctors guilty of
medical negligence. Ultimately, all parties agreed to a
multimillion-dollar settlement — its exact amount is confidential —
which remains in a trust for A.J.'s care.
Some people argue against the idea that we should have a right to
terminate unwanted genetically flawed children on scientific, not
moral, grounds. Bill Hurlbut, a Stanford professor and a member of the
President's Council on Bioethics, asserts that a lot of genetic testing
is hyped. "Genes are not like Legos," he says, mocking the idea that
the results of an amniocentisis, often delivered to parents as a neat
picture of 23 chromosome pairs, can tell you who a child will be. "Our
genes mix with whole societies of molecular interactions, including our
environment. It's not just nature-nurture; it's cycles of momentum that
get going. A lot of very sophisticated people believe there is a
straight line from a gene to an expressed trait, and that is just
wrong. We're going to regret we had this phrase, 'It's in our
genetics."'
Serious questions have been raised by preimplantation genetic
diagnosis. P.G.D. is available to families undergoing in vitro
fertilization, and it works like this: an egg is fertilized and starts
dividing. When the embryo reaches the eight-cell stage, a single cell
is removed and tested for genetic abnormalities. If the cell's DNA
looks normal, the embryo is implanted in the mother. If the DNA does
not, the embryo is frozen or tossed out. But it is not so simple. In
2005, a team from Reprogenetics in West Orange, N.J., continued growing
55 embryos that previously tested as abnormal and found that a
surprising number of the cells, when tested later, were genetically
normal. After a few more days, an average of 48 percent of the cells
were normal. After 12 days, one embryo contained 76 percent normal
cells. This raises some interesting questions: do embryos containing
some genetically flawed cells tend to heal themselves? How do you know
if the cells selected for P.G.D. are representative? Is basing
termination decisions on genetic information as solid a footing as we
have thought? If not, how can we conscience the decision to abort?
Susan Crockin, the legal scholar, says she believes that P.G.D., as
well as other types of prepregnancy testing, like screening donor eggs
and sperm for genetic disorders, will very likely be the causes of all
sorts of new lawsuits. For instance, a sperm bank in California has
already found itself facing a wrongful-conception lawsuit, brought by
parents who argue that their genetically impaired child would not have
been conceived at all had the donated sperm been vetted properly.
Egg-donor programs may soon be in the same position.
An unintended and particularly disconcerting consequence of all these
new reproductive lawsuits is that they may bias the medical
establishment toward termination, and some argue that such a bias
already exists. This is alarming for many reasons, not least of which
is the fact that several studies have shown that the raising of
children with impairments is on the whole a lot less difficult and a
lot less different from raising so-called normal kids than we imagine
it will be. "Families with severely impaired children do not differ
significantly in stresses and burdens from families with normal
children," Wasserman, the bioethicist, maintains, citing articles like
"The Experience of Disability in Families: A Synthesis of Research and
Parent Narratives." The idea that a handicapped child will destroy a
marriage is exaggerated, he told me: "A child prodigy can have just as
large an impact on a family as a child with cystic fibrosis or Down."
The ways in which genetic counseling is biased toward termination are
both systemic and subtle. Research suggests that counselors may steer
patients toward, as one counselor said to me, "starting again with a
clean slate." As another expert, Barbara Biesecker, director of the
genetic-counseling training program at Johns Hopkins University,
explains, "There's kind of a trend out there to call people at home and
then just refer them back to the hospital" — meaning that the family
who has learned that a fetus has a genetic disease is quickly referred
to someone who will help get rid of it. This, according to Biesecker,
is "a cop-out." Delivering the news on the phone, often without a
spouse present, is, she says, "filled with assumptions about what's
right for people — it assumes that they'll act," meaning terminate.
"When I ask counselors why they're doing so much work on the phone,
they say, 'That's what people want.' But people are in crisis; they
need to slow down. I believe we're capable of making good decisions for
ourselves in hard circumstances, but I think we should be putting up
roadblocks to quick answers. I don't think it should be easy."
Compounding the problem, most of the news that genetic counselors
provide to prospective parents about disabilities is negative and
clinical. Face-to-face meetings, which often occur before
amniocentesis, tend to be filled with mini-science lectures about how
chromosomes replicate or how trisomies occur, not the swirling emotions
that surround the news that the baby in your belly may not be the baby
you dreamed of having. In an attempt to rectify the situation, Senators
Sam Brownback, Republican of Kansas, and Edward Kennedy, Democrat of
Massachusetts, last March sponsored the Prenatally Diagnosed Conditions
Awareness Act, a bill designed to mandate that more positive
information be given to parents about the life of a disabled child. At
a news conference to announce the bill was Brian Skotko, a Harvard
Medical School student. Skotko published a paper in The American
Journal of Obstetrics and Gynecology last spring based on his study,
the largest and most comprehensive on prenatally diagnosed Down
syndrome. It showed that obstetricians and genetic counselors failed to
give expectant mothers who received a prenatal diagnosis of Down
encouraging data about raising a Down child. One mother in Skotko's
study reported that her genetic counselor "showed a really pitiful
video first of people with Down syndrome who were very low tone and
lethargic-looking and then proceeded to tell us that our child would
never be able to read, write or count change."
Few would be against parents getting a complete and accurate picture of
raising an impaired child, but how, exactly, does that picture look?
Different families' experiences with similar impairments are wildly
disparate, and Skotko's study has been criticized for having sample
bias, because he collected his surveys through Down-syndrome family
associations, groups presumably filled with people having relatively
good experiences with the disease. (Skotko has a sister with Down.) Not
included in his sample, for instance, was a 66-year-old woman named
Wendolyn Markcrow of Buckinghamshire, England, who last year on Easter
Monday gave her 36-year-old son, Patrick, 14 sleeping pills and
suffocated him with a plastic bag and then attempted suicide. Patrick
had Down syndrome, rarely slept at night and hit himself in the face so
regularly and forcefully that he detached his retina. When arrested,
Markcrow told the police that she had "snapped."