Sarah's birth parents placed her for adoption for one simple reason: She has Down syndrome.
What would you have done?
By Nell Bernstein
Photographs by Mary Ellen Mark
Sarah Landon became Judy Adam when her new mother Kim Adam adopted her in 1998.
TRACY LANDON savored every moment of her second pregnancy. She and her husband, David, had both lost parents in recent years, and a series of failed fertility treatments had left Tracy wondering if she would ever conceive again. After such a long, difficult stretch, the couple was ready for something to celebrate. . In the mornings, Tracy would sit on the sunporch, look at the roses she had nurtured in the front yard, and plot out a future with the freckled, blue-eyed daughter she planned to call Sarah. She pictured talking to Sarah about her first date; helping her shop for a prom dress; taking her out to dinner on a visit home from college.
This was the "perfect little life," as Tracy calls it-the one she and David had always dreamed of for
themselves and their children-that flashed before her eyes when she asked the team of doctors and nurses assigned to her daughter's case not to take any extraordinary measures to keep the fragile newborn alive. "I want a 'do not resuscitate' order," she told the assembled group. In the stunned silence that followed, she added, "I have the right."
One of the nurses called for the hospital social worker while the doctors explained, as gently as they could, that Tracy must have misunderstood-the fact that her daughter had been born with Down syndrome and was suffering treatable complications did not make a DNR an option. "We're not dealing with a 90year-old man who has advanced cancer," they told her. Their job, they explained, was to fight for the life of the child.
"Are you sure?" Tracy asked.
Tracy had turned 35 during her pregnancy with Sarah and had chosen to forgo amniocentesis, a test that diagnoses Down syndrome with 99 percent accuracy. It was a choice she made quickly and easily. At her age, the odds of the amnio inducing a miscarriage were about 1 in 300-roughly the same as the odds that she was carrying a child with Down syndrome, a genetic disorder that occurs in about 1 in 800 to 1000 live births and gives rise to a range of physical and mental difficulties. Several of Tracy's friends had gotten pregnant in their late thirties and had chosen to skip amnio; all of their babies had been born healthy. In fact, she'd never even met a person with Down syndrome. Anyway, as she told her friends early in the pregnancy, what was the point? If the baby did have Down syndrome, of course she would keep it.
But suddenly everything seemed a lot more complicated. Sarah had trouble breathing from the moment of her birth and had to be rushed immediately to intensive care. It would likely be hours before the doctors learned anything more, nurses told the distraught parents, so David Landon, who suffers a seizure disorder that's exacerbated by exhaustion, went home to get some rest and care for the couple's five-year-old son, Sean. Tracy was alone when two neonatologists returned to explain that Sarah had been born with a hole in her heart and would need to stay in intensive care. She would also, they said, be given a genetic test to follow up on their suspicion that the heart defect was a result of Down syndrome.
After the doctors left, Tracy lay in her hospital bed, listening to the cries of newborns in the hallway being carried to their mothers. "I will never again be as brokenhearted as I was that night," she says. Tracy knew that her baby was suffering and there was absolutely nothing she could do about it. She was also terrified that her own life would never be the same. In the hospital's neonatal intensive care unit, where Sarah was to spend nearly three weeks, Tracy found herself looking enviously at the parents of premature infants. Their babies
were likely to improve; in a few years, this part of their life might be little more than an anecdote. Sarah's problems would stay with her forever.
The hospital social worker was the first to offer Tracy a way out. "You know," she said, "there are people who adopt these children?' That's how it all began, the choice that would ultimately recast Tracy-formerly considered a loving mother-as a shallow narcissist or worse in the eyes of many strangers and even some friends. After news of Tracy and David's decision got out in their hometown, Tracy received anonymous phone calls condemning her as a "lousy mother" and "unworthy."
Tracy feared for her baby, but she was also terrified her own life would never be the same.
Bath time in the Adam household is just like it is in any other home: equal parts chaos and fun, and a time for family togetherness.
But many who are quick to condemn are perhaps not being honest with themselves. Most parents in the United States fear giving birth to a disabled child-if that weren't true, genetic testing would not be routine, nor would abortion be the most common response to a prenatal diagnosis of Down syndrome. Among families who do give birth to disabled children, a significant number consider placing those children for adoption. While no one knows exactly how many parents of disabled children eventually relinquish them, researchers estimate that at least half of the children legally available for adoption at any given time have some sort of disability. As Tracy sees it, she and David were simply acting on an impulse that many people have. They were handed something too heavy for them to carry, so they passed it on to someone who could-another parent who would be grateful for their decision.
Still, some advocates for the disabled are much less sanguine. Decisions like Tracy and David's, these experts warn, harshly illuminate how we as a society view disability and parenthood and raise the unsettling question of whether it's possible to have too much control over your own life.
Tracy had never seen herself as one to duck a challenge. She and David had helped both of Tracy's parents and David's mother through illnesses and had supported each other through their parents' deaths. David's seizures were frightening, but Tracy coped. Once, while she was pregnant, David stopped breathing during a seizure and Tracy rushed over to do mouth-to-mouth resuscitation. Still, Sarah's disability seemed different somehow. Tracy describes herself as the kind of person who wants to crawl under the table when her son sneezes in a restaurant; anything that calls attention to her or her family fills her with anxiety. And if there was one thing she could count on in a lifetime with her daughter, it was that people would stare. How could she pretend otherwise?
In the hospital one day, Tracy ran into a woman with a nineyear-old daughter who had Down
syndrome. The girl could not speak and was jumping up and down on the furniture. Tracy approached the mother and blurted out that she had just given birth to a child with Down syndrome. The woman embraced Tracy. "If I had it to do over, I wouldn't have kept her," the woman confessed. "It almost destroyed our marriage. We don't have a life. It's like having a noose around my neck." The hospital chaplain, who had a three-year-old son with Down syndrome, told a different story. She explained about federally mandated early intervention programs that would provide physical, speech, and occupational therapy at no cost. The therapists would come to the Landons' house and teach Tracy how to care for her daughter.
Still, Tracy thought she noticed a little hesitation in the chaplain's voice. "What's the bad part?" she asked. "Well," the chaplain answered, "sometimes my stupid self wishes I was like the other mothers and my son was normal." The back-and-forth of it all was beginning to be truly crazy-making. But before coming to any decision, Tracy felt she at least had to bring Sarah home. "I had to try to bond, try to mother her to see what it felt like."
When she was 19 days old, Sarah did go home with David and Tracy, and Tracy's real soul-searching began. She got on the Internet, searched bookstores, started making calls. Well into the 1970s, she learned, parents of a child born with Down syndrome (or "Mongoloid idiocy," as it was called at the time) were routinely given the grimmest possible prognosis and advised that institutionalization would be best. These predictions were based on the observation of children raised in institutions, since that's where the majority of such kids wound up. Only in the 1980s, as more parents began bucking the conventional wisdom and bringing their children home, did ideas about the capabilities of people with Down syndrome begin to evolve.
It's now known that children born with the condition face a wide range of prospects. They are at increased risk for a number of health problems-congenital heart defects like Sarah's, respiratory and digestive trouble, recurrent infections, childhood leukemia-but with proper treatment, they may live relatively healthy lives. Some grow up to be "high functioning," pursuing an education, holding down jobs, living independently or semi-independently in supervised group homes. Others, like the little girl Tracy met at the hospital, struggle to develop the capacity for language and may remain dependent all their lives. For reasons still unclear, about 25 percent develop Alzheimer's disease after the age of 35.
Looking at her infant daughter, Tracy had no way of predicting what path the girl would eventually follow. Taking her chances would require a leap of faith that Tracy couldn't quite bring herself to make, a level of acceptance she sought but could not seem to find within herself. As she researched the capacities and limits of people with Down syndrome, Tracy realized, she was also coming to terms with her own. All the while, Tracy says, "I was waiting to feel I couldn't live without her." She waited in vain. Before long, Tracy found herself sliding into a deep depression.
The turning point came one afternoon when she was sitting in the living room, staring into space. Five-year-old Sean came in holding what Tracy at first thought was a doll. In fact, Sean had somehow climbed into
crib and was carrying the baby in his arms. "Mommy, don't let her cry anymore," her son instructed. "You let her cry too long." Clearly, both of her children were suffering. "I've got to do something," Tracy said to herself. "This isn't right."
When Tracy first told David she wanted to find an adoptive home for Sarah, he thought she was joking. "At first, I was probably as much against it as anybody could be," says David, a compact man with shaggy brown hair and deep-set blue eyes. "When you hear a diagnosis like Down syndrome, all your dreams for your child are pretty much history. But that doesn't change the fact that you love her."
The couple spent hours at the kitchen table, talking, arguing, and crying. "This is our daughter, our responsibility David told Tracy. "We love her. Sean loves her. Why can't we keep her?" Tracy told David about the lifelong medical problems to be expected, the strain Down syndrome could put on a marriage. She was the one, Tracy reminded her husband, who would be dealing with Sarah's needs on a daily basis while he was at work, and it was already clear that the baby was not getting the stimulation and attention she needed from a mother so depressed she could barely change her daughter's diaper.
Tracy had watched her own mother die at the age of 58, after a life spent entirely in service to her seven children. Tracy had been the sixth, conceived after her mother thought she was through with childbearing, and Tracy's older siblings had told her that her mother cried every day during the pregnancy. Watching her mother's sacrifices, Tracy believes, made her "selfish," unwilling to give herself up so entirely for the sake of her children.
It was Tracy's pain that finally turned David around. "I recognized this wasn't something we could have done as a team," David says, his voice dropping to a whisper. "You're sitting there trying to keep yourself together emotionally and physically. You have a five-year-old who can't even begin to understand what's going on. You're trying to help your baby. And somehow you have to find the strength to support someone who is in a horrible depression."
Sarah was one month old when Tracy picked up the phone and called an adoption agency, immensely relieved but also apprehensive. How, she wondered, could she ask any family to take on the burden of a child who was destined to a life of medical problems and cognitive limitations a burden that to Tracy felt far too heavy to bear?
You can ask because many families want to. A hundred and fifty miles of turnpike, and another fifteen of winding country roads, separate Tracy's suburban home from the tiny house in the Hudson River Valley where Sarah, now known as Judy, lives with her adoptive mother, Kim Adam, and her new brother, Matthew. Kim-40 years old and dressed in sandals, denim shorts, and a T-shirt full of dancing Tiggers-says she was single and in her early thirties when she realized how much she wanted kids. But she didn't particularly want them in the traditional way. "I've never had a desire to give birth to children," she explains, "only to raise them." With her medical training and knowledge of the medical system (she works as an X-ray technician), Kim figured she had something special to offer a child with Down syndrome. And the idea of caring for a sick child brought out protective feelings she longed to express.
It took Kim several years to locate an agency that could help her find a child with Down syndrome. By then, she had moved from New York City back home to the Hudson Valley, where grass was more plentiful than pavement and the low cost of living would allow her to work part-time and stay at home the rest of the time with a child. Nearly a year passed before she got a call from the agency telling her that a newborn with Down syndrome had been placed for adoption. Matthew was three weeks old and had never been held when
Kim first went to visit him in the intensive care unit. She'd not been invited, and a nurse told her she was not allowed to pick him up or even come inside the unit. Kim demanded to see a supervisor-"You'd better get someone in here and get them here fast," she warned, "or I'm gonna lose it!" Within hours, Kim had Matthew in her arms. It would be the first of many battles on behalf of her baby. In this overlooked and undervalued child, Kim had found her crusade.
"I held him for four hours without putting him down," Kim recalls. "The next day I held him for eight. I couldn't believe my eyes-'Oh my God, this is really my little boy." Three weeks later, she took Matthew home. A skinny, blond six-year-old, Matthew is an affectionate, demanding child who requires regular hugs from his mother and, after a brief introductory period, from visitors as well. While a physical therapist works with Judy outside, Matthew passes the time by performing a wild, wiggling, squidlike dance to the Mamas and the Papas playing softly from a small boom box on the kitchen table.
And then there's Judy. Meeting the little girl described primarily in terms of her flaws is something of a shock. A darling 20-month-old in a pink cotton dress, with her birth mother's brown hair and blue eyes, Judy has recently learned to walk, and teeters around the house with her hands poised over her head like a novice ballerina, tremendously pleased with her accomplishment. Like many children with Down syndrome, whose comprehension outstrips their ability to communicate verbally, Judy has learned sign language before learning to speak, and with Kim's prompting, she demonstrates a budding vocabulary (hand over her heart for "please"; embracing her stuffed frog for "hug") before wandering off to investigate a train set on the living room floor.
Kim's parents, who live 40 minutes south by car, take care of Matthew and Judy on the weekends, when Kim works; otherwise, she is with the kids full-time, caring for them at home and advocating for them in the larger world. In a given week, she may make 10 to 20 phone calls to teachers, doctors, therapists, and Medicaid and Social Security workers, trying to make sure the kids get what they need. Her current battle involves finding a new school for Matthew, who was thrown out of the last one because he couldn't keep quiet or stay in his seat.
Kim puts her heart into these struggles-maybe because she sees something of herself in her underdog kids. "They get shunned like I got shunned," says Kim, who describes herself as a "loner" in grade school and a "very bad student" later on, who nevertheless decided she was go graduate from a four-year college. When she applied to Fordham University, in the Bronx, an admissions officer told her that her grades were too poor. But he'd let her take two classes, he said. If she passed those, she could take two more. By the time Kim graduated, she was an honor student. Now, when someone tells her that her kids can't do or have something, she takes it personally and sets out to prove the naysayers wrong.
Not that she doesn't worry about their future. "Every day of my life I I think, 'Where will they be in 20 or 30 years? Will I have enough money to take care of them? Will I have somebody to help me care for them?" Kim's sisters have offered to be backup guardians for the kids, but she wonders what will happen if they aren't able to care for disabled adults in their own old age. If Matthew and Judy wind up in a group home, the state will foot the bill, but the prospect of her kids receiving inadequate care terrifies Kim. Sometimes she thinks the best she can hope for is to outlive her children; that way, they'll be spared the grief of her loss, and she, the fear over what will become of them after she is gone.
But Kim does more than worry; she also plans. Her living room shelves feature investment manuals such as Suze Orman's The Courage to Be Rich mixed in with a collection of children's books and games. Both kids have signed up with a modeling agency and have done catalog shoots for companies such as Toys "R" Us. Kim invests the proceeds in mutual funds, as she does the monthly subsidy she receives for Matthew from the state of New York, in order to provide for their needs as adults.
"Some days it's overwhelming," Kim admits. "Some days you dwell on the fact that there's not a lot of money and the car's broken down. But then you say, 'We're not gonna worry about that right now,' and two days later you're going, 'Yippee, let's go to the zoo!" Her one regret is that Matthew's birth parents have vanished, leaving him with no medical history and no access to that part of his family. Kim is pleased that Tracy and David have wanted ongoing contact with Judy.
As it happens, the two families have forged a relationship much closer than either had expected. Every month or so the Landons and the Adams get together at a shopping mall halfway between their homes, and Kim always makes it a point to wander off for a while so Tracy can have some time alone with Judy. Each woman describes the other as an extended family member.
Kim refuses to judge Tracy. The idea that a maternal instinct should come swiftly and "naturally" to a biological parent-a shibboleth that added greatly to Tracy's burdens-but must be cultivated over time in an adoptive parent makes no sense to Kim. As far as she's concerned, she became a mother the instant she laid eyes on each of her babies. And if Kim has not experienced blood and maternity as synonymous, why should she expect that Tracy do so?
It is certainly hard to argue that Judy is in any way deprived. She has a mother who dotes on her, who will go to the ends of the earth to ensure that all her medical, educational, and emotional needs are met. She has an older brother who, after initial reservations ("Get it out of here!" he shouted when introduced to his bawling baby sister), has fully acaccepted her as a playmate and member of the family. She has the attention of her birth family, who will be there to answer any questions she may have as she grows older. By all appearances, Judy Adam is a very happy child.
Does this story has a happy ending? Tracy and Kim would tell you that it does. Tracy has a life closer to the one she had hoped for; Kim has exactly the daughter she wanted; and Judy has a devoted new family.
But Adrienne Asch, the Henry R. Luce professor of biology, ethics, and the politics of human reproduction at Wellesley College college takes a different view of the situation. From Asch's perspective, the inclination not to judge a woman like Tracy-to accept the idea that some parents are simply better able than others to raise particular children-looks sentimental in the worst sense of the word. "As a society," Asch asserts, "we will
never accept people with disabilities if we support the notion that families don't need to.
"When parents choose not to raise a particular child because of that child's characteristics, they shouldn't be surprised that people find it disquieting," Asch says. "Why do they think they can love a child who doesn't have a disability and can't love one who does? Perfect people become less perfect. Perfect fantasies become less perfect. What is this parent going to be like when her other kid doesn't win a soccer prize or become first violinist in the New England Conservatory Youth Orchestra?"
Disability, Asch points out, far from being a fluke occurrence from which most of us will be able to insulate ourselves, is a part of the human condition. One-sixth of the population have a debilitating chronic illness or some other kind of disability at any given time, as do one-tenth of all school-aged children. "What are we saying?" Asch asks. "That we can't accept one-tenth of our children?"
The widespread use of prenatal genetic testing, Asch believes, reflects our limited view of what it means to be disabled. And recent improvements in genetic testing have raised the prospect that children with Down syndrome or other abnormalities may virtually cease to be born in the not-so-distant future, a prospect that Asch and many other disability rights advocates find chilling. Testing, Asch says, "assumes that a part, a trait, is the whole story. You get a label your child has spina bifida cystic fibrosis, Down syndrome-and you think you know everything there is to know about your child. You don't. You know one thing."
Robin Steele heads up an adoption program for the Down Syndrome Association of Greater Cincinnati, and she agrees with Asch that medical labels are unfairly limiting. "Kids with Down syndrome have personalities as unique as anyone else's," Steele says. She and her husband are parents to II children (7 adopted, 1 birth, 3 foster), 4 of whom have Down syndrome. "I never would have known from looking at my daughter Elizabeth at eight months old," she says, "that what 1 would have at 20 is an avid horseback rider."
And research suggests their families farewell. Philip Ferguson, associate professor in the Department of Special Education and Community Resources at the University of Oregon, has synthesized studies of families who have children with intellectual disabilities such as Down syndrome. He found that they do report increased stress in the first months of their child's life, but that the stress begins to drop off after a year or two as they adapt to their child's needs-and eventually they fare roughly the same as families in general on various measures of satisfaction and stability.
"I'm not saying there aren't any problems or that the experience is uniformly good for all families," Ferguson says. "But with the advances in research, and with so much more treatment now available-new therapies and forms of instruction-I think we're entering a new era in terms of Down syndrome. It's not the unmitigated disaster it was portrayed as 20 years ago, and in some circles still is."
Within a year of placing Judy with Kim, Tracy was pregnant with twins, a boy and a girl. Throughout the pregnancy, Tracy was terrified that something would go wrong. But the twins' amnio came back normal, and the little boy was born healthy at 8 pounds, 2 ounces.
Then, abruptly, the little girl went into cardiac distress in utero. The doctor performed an emergency cesarean section, and Tracy woke up to find her baby in an incubator draped in IV tubes. A neonatologist told Tracy and David that she suspected severe brain damage.
"God is getting me because of what I did," Tracy thought. But this time she knew immediately that she would take whatever came. "I couldn't give another child away," she says. "I had tempted fate. It was my responsibility" As it turned out, the neonatologist's hunch was wrong, and Tracy's daughter flourished. On a summer afternoon, the four-month-old twins fill the Landons' home with their presence, one invariably wide awake while the other dozes off. David is off work this afternoon, and he and Tracy hand the babies back and forth with seamless, unspoken teamwork. A yellow school bus pulls up in front of the house and dispenses Sean, who's wearing a Bugs Bunny Space Jam T-shirt. He comes inside and buries his head in his brother's belly, much to the baby's delight.
Perhaps more than anyone, Sean has struggled with his sister's departure. Kim Adam remembers hearing him in the background during her first phone conversation with Tracy, calling, "Mommy, why can't we keep Sarah home with us? I don't want to get rid of Sarah!" Through the eyes of the adults involved, the question of what it means to relinquish a disabled child seems terribly complicated; through the eyes of a child who loves his baby sister, it all seems unbearably simple.
The Landons did everything they could to buffer the impact of the adoption on Sean. The family went into counseling, and Sean started seeing a child psychologist. Tracy had read a book by a woman who had relinquished a child with Down syndrome that recommended deflecting acquaintances' questions with vague answers like "Things didn't work out as we planned." But Tracy gritted her teeth and told anyone Sean might come into contact with-doctors, teachers, neighbors-exactly what had happened, to spare Sean awkward questions.
Despite his parents' efforts, in the months after Sarah moved out, Sean would wake up in the night crying, "Mommy, I miss my baby sister." When the twins were born, Sean's fears were magnified. 'Will you send the twins away?" he asked his parents. 'Will they get sick like Sarah?"
Looking around the Landons' sun-filled family home, it is easy to imagine Sarah scampering across the kitchen floor, playing with Sean on the shady front lawn, investigating her new baby brother and sister. But that's not the way it turned out. Sarah is Judy now, Kim is her mother, and Tracy has the healthy baby girl she sat on the porch and dreamed of not so long ago.
In his ongoing effort to understand how all of this came to pass, Sean will sometimes approach a perfect stranger on the street and venture an explanation. "I used to have a little sister," he'll announce, "but she doesn't live with us anymore. She was sick, so she went to live with a family who could love her better and take better care of her."