Dylan soon proved to have problems that EI could not address. He had recurrent intestinal crises that landed him in the hospital repeatedly—forty-one emergency room visits in his first eleven months. “I had a frequent-flier card in the ER,” Michelle said. “I would call and admit myself.” Dylan needed three major operations; physicians at Columbia gave him a 2 percent chance of survival. Jeff and Michelle lived in the intensive care unit with him for nine weeks straight. “He was on fourteen machines,” Michelle recalled. “They brought in a fifteenth machine, the dialysis machine. I sat there, looking at him, thinking, ‘Just go. It’s okay. I can’t do this, either.’ I felt so guilty, saying that I couldn’t handle watching my kid die. The priest comes in four times to read last rites. There were women on the second floor of that hospital who were so affected by my son, they came up daily and prayed over him, with rosary beads.” As Dylan fought for his life, the Down syndrome became secondary. By this time, Jeff, also, had overcome his negative early response. His conversion came too late for the marriage, but not too late for his son. “It wasn’t until we almost lost him that Jeff realized how much he loved him,” Michelle said. “Now they’re inseparable. Jeff adores this child.”
Dylan emerged at a year old with twenty-two inches of his colon missing and a patched heart, but his physical health has been excellent since then. “He has a little gas problem; he’s stinky, but who cares?” Michelle said. Dylan responded well to EI. “I was one of these people who would have been annoyed that my son’s preschool had special-needs kids that might slow them down,” Michelle said. “So I make myself perfectly charming to the other mothers. The woman who runs his nursery school believes in inclusion as a way of life. She called me the second week of school and said, ‘He has a major gas problem. Make no mistake about it: he’s already different. If he’s now the smelly little kid with Down syndrome, people are not going to want to play with him.’ That was brutally, beautifully honest. We found Beano, which is an enzyme that controls the gas.” Michelle nonetheless expects Dylan’s sweetness to carry the day. “My grandmother got this little puppy, and he was trying to figure this puppy out. He had his favorite puzzle piece in his hand, and he gave it to the puppy. He gives his favorite things away. He’s heart-spontaneous.”
Michelle has the zeal of a convert. “It was like I was trying to get FM on an AM radio in my old life. In a weird way, it was like this happened so I could see what I was capable of. Every single trait that I wasn’t good at, I’ve had to develop because of him. I was living superficially and attached to my ego and my stuff and my image. I was very judgmental, critical—and how can I be judgmental of anything now? We’re supposed to share all of our talents and gifts, but we have to know what they are first. Now, I have to help people, instead of just using my talents to make money.”
Michelle consults with new parents, encouraging them to keep their children with DS. In the one case in which the couple gave up the child for adoption, she was devastated. I asked her about people who didn’t share her dynamism, spirituality, and sense of purpose. “They all do,” she said. “That’s the wild thing with special-needs parents. This comes raging out of you. I feel such strength and courage in these women. I say to them all the time, ‘I know you don’t feel like you know what you’re doing. Trust me. You are the perfect mother for this kid.’” She paused for a second and smiled. “You know, they probably want to smack me.”
• • •
In about 95 percent of cases, Down syndrome is the result of a spontaneous mutation rather than a transmissible gene, and people who have DS seldom reproduce. Because DS was among the first major genetic anomalies for which prenatal testing existed, and because it is the most common genetic anomaly that can be detected in utero, it has been at the center of the abortion debate. Statistics range, but at present, about 70 percent of expectant mothers who receive a prenatal diagnosis of Down syndrome choose to abort. Ironically, outcomes for people with DS have improved more radically in the last forty years than have the outcomes for almost any other anomaly. People who would have languished in institutions and died at ten are now reading and writing and working. With adequate education and health care, many live more than sixty years; the national life expectancy for people with DS in the United States is around fifty, double the 1983 figure. People with Down syndrome are also interacting with a world that has many more accommodations for people with special needs. Supported employment means that many higher-functioning people with DS can find jobs; the general tolerance in society means that a person with DS arriving at a restaurant or a store with his family is more likely to be received graciously. In a recent study in Canada, parents of children with DS were asked whether they would pursue a cure if one were available. More than a quarter said they would not, and another third said they were not sure.
Targeted abortion had been expected to eliminate most of the population with Down syndrome, but the proportion of people born with the condition in any given year has increased or remained constant since testing was introduced. Such children are not evenly distributed across the population. Eighty percent of Down syndrome births are to women under thirty-five who have not had testing, and many of these are poor, as wealthier people are more likely to seek prenatal testing even if they are not in a risk category. Studies suggest that among people who carry to term, those with fewer material advantages may be less perfectionist and ambitious for their children, and therefore more readily accepting of the permanent dependence of children with DS. Some agencies specialize in arranging adoptions of children with DS; the head of one said to me, “I wish I could show you a list of the people who’ve given up their babies to me. It would read like Who’s Who in America.” More women choosing to have prenatal testing and abort fetuses diagnosed with DS brings the DS population down, while more women conceiving in later life brings it up. As people with DS who used to die at ten are living to sixty, the number of people on the planet with Down syndrome is increasing; the number in the United States may double between 2000 and 2025, to as much as eight hundred thousand.
The American College of Obstetricians and Gynecologists recommended in 2007 that all pregnant women undergo nuchal translucency in the first trimester, with the option of genetic counseling and amniocentesis or CVS in the second trimester for those with poor nuchal translucency results. Disability rights groups oppose this protocol; the conservative columnist George Will, who has a son with DS, called it “a search and destroy mission.” Moderates have asked that people simply be better informed about the experience of parenting a child with Down syndrome. Stephen Quake, a Stanford professor who developed one of the new blood tests for DS, said, “It’s a gross oversimplification to assume that these tests are going to lead to the wholesale elimination of Down syndrome births. My wife’s cousin has Down syndrome. He’s a wonderful person. It’s not an obvious step that you would terminate an affected pregnancy.” Nonetheless, activists worry that women who wish to keep a DS pregnancy may feel pressured to terminate as prenatal diagnosis gets easier. People without health insurance have a much harder time obtaining prenatal tests, and some worry that this will make DS into a poor man’s condition.
In contrast, Michael Bérubé points out that having children with DS could become the province of the rich if prenatal screening becomes universal and insurance ceases to cover the medical and educational costs for those who keep such children. The existence of tests provides an imperative to use and act on them. One study said that women who do not use prenatal testing or who keep a pregnancy they know will lead to a child with a disability “were judged more responsible, more to blame, and less deserving of both sympathy and social aid subsequent to giving birth to a disabled child than were women to whom testing was not made available.” These demographic suppositions seem to cancel each other out and point to the confusion around conditions such as DS, which can be considered both burden and luxury, sometimes by the same person. Michael Bérubé wrote, “So much depends on whether our
technologies serve our social desires or our social desires are made to serve our technologies.” In a newspaper interview, he added, “The fifteen million dollars spent on the new test for Down by the National Institute of Child Health and Human Development might have gone instead toward much-needed research on the biochemistry of people living with the condition.”
Prenatal screening and support for people with DS should not be mutually exclusive, any more than cochlear implants have to engender the death of Sign, any more than a vaccine for an infectious disease should prevent our treating people who develop it. In the pragmatic economy of modern medicine, however, an ounce of prevention is usually held to be worth a ton of cure. As the techniques for prenatal diagnosis of DS have become more available, funding for research in the field has diminished. This seems particularly tragic because treatment for the major symptoms of DS, long considered impossible, is now a field full of promise. In 2006, Alberto Costa demonstrated that Prozac could normalize the compromised development of the hippocampus in mice that had a Down’s-like condition. He later found that the Alzheimer’s drug memantine boosted memory in similar mice, most likely by quieting neurotransmitter systems that he believes interfere with learning in DS. In 2009, William C. Mobley, chairman of neurosciences at the University of California, San Diego, showed that raising norepinephrine levels in the brains of these mice allowed them to learn at the level of typical mice. In 2010, Paul Greengard, of Rockefeller University, normalized learning and memory in such mice by lowering levels of β-amyloid, which is also implicated in Alzheimer’s disease.
Mobley said, “There’s been a sea change in our ability to understand and treat Down syndrome. There’s been an explosion of information. As recently as 2000, no drug company would possibly have thought about developing therapies for Down syndrome. I am now in contact with no less than four companies that are pursuing treatments.” Commenting in the New York Times, Craig C. Garner, codirector of the Center for Research and Treatment of Down Syndrome at Stanford University, said, “This was a disorder for which it was believed there was no hope, no treatment, and people thought, ‘Why waste your time?’ The last ten years have seen a revolution in neuroscience, so that we now realize that the brain is amazingly plastic, very flexible, and systems can be repaired.”
As with the deaf and their implants, and dwarfs and their ELL, this is another scramble—not so much for identity, this time, as for science. If people with DS can be normalized, should we think more carefully about terminating DS pregnancies? Costa said, “The geneticists expect Down syndrome to disappear, so why fund treatments? It’s like we’re in a race against the people who are promoting those early-screening methods. If we’re not quick enough to offer alternatives, this field might collapse.”
• • •
Angelica Roman-Jiminez was twenty-seven when her daughter Erica was born in 1992. Erica was a first child, and there had been no thought of doing amniocentesis. But when the baby was born, Angelica knew that something was wrong. “I remember holding the doctor’s arm and saying, ‘Please tell me.’ My husband, I could see it in his eyes.” The doctor told Angelica that her baby had “mild Down syndrome”—though there is no way to tell the severity of Down’s symptoms in a newborn.
The doctors offered the possibility of adoption, but Angelica was not interested; still, she wondered how to tell people. “I called my parents. I said, ‘The baby was born with . . . ,’ and I couldn’t finish the sentence. My father said, ‘Well, does she have all her fingers? Does she have all her toes?’ I said, ‘Yes, yes.’ He said, ‘Whatever it is, we’ll deal with it.’ You always hear about unconditional love for your children no matter what. And there it was.” Her priest said, “God gave you this child for a reason. Anything that I’ve seen come your way, you’re able to tackle it, and this will be the same.”
Not everyone had the grace to respond in kind. “A lot of our friends looked at it as a death,” Angelica said. “I couldn’t move from why. ‘Why did this happen to us?’ But then you realize, ‘Wait a minute, she’s alive. She needs our love and attention.’ I still wanted to do birth announcements, and I sent along a letter describing what our lives were now.” Though she is Catholic, Angelica was working in a clerical job at Trinity Episcopal Church in lower Manhattan, and a coworker had a friend who had a child with Down syndrome. “She stayed on the phone with me for over an hour and told me which books to read. To stay away from anything earlier than the eighties. To join a parents support group. That was when I broke out of that ‘Why?’” It helped that Erica was born the same year that Jane Pauley featured Jason Kingsley on her program. Images of people with DS were proliferating, as they had not even a few years earlier.
Within six weeks, Angelica had enrolled Erica in an early-intervention program. “When your child is born with a disability, all your high hopes and dreams are shattered. When she was one, I was always looking to see whether she was keeping up with the other children at the center. She was struggling with her grasp, her gross and fine motor skills. Then one day she had the coordination to pick up a Cheerio, and I wanted to jump for joy. A few years later, she needed ear tubes. Of course we wanted to do our best there, because if you can’t hear, how is your language going to develop? So the doctor said, ‘Well, she’s not going to be perfect.’ I felt, how dare he say that? He’s never going to be perfect, either.”
Speech development was ongoing. “She would point at what she wanted, and we would encourage her, ‘Tell us what you want.’ One time she had an evaluation for school, and the psychologist asked me whether Erica made her bed in the morning. I said, ‘Well, no. We’re in a rush. I’ll just do it, and we’ll go.’ She checked off, ‘Not given the opportunity.’ Now I try always to give her the opportunity, whether it’s zippering up her coat, tying her shoelace. She can write her name, address, and phone number.”
Erica struggles with poor judgment, as do many people with DS. “We try to teach her, ‘This is danger, this is not,’” Angelica said. “She’s very trusting, without stranger anxiety. We’ve taught her that when she meets someone for the first time, she should shake hands. We have to explain, ‘You can’t hug everyone. Not everyone is nice.’” Angelica looked sober. “She doesn’t get phone calls. She doesn’t get a lot of party invitations. We’ve had her in programs with other children who have disabilities, ballet and music classes. I feel these other children with special needs are her peers. I want her to have that close friend who is going through the same things she is. I started a Girl Scout troop for exceptional girls. We have girls who are autistic, girls with Down syndrome, girls who are wheelchair-bound.”
This work occupies a great deal of Angelica’s time. “I also have a younger daughter, Leah, who is in those preteen years, and sometimes she’s concerned about how she’s seen by others. ‘Will they accept me if I have a sister with special needs?’ We tell Leah, ‘There’s nothing to be embarrassed about. This is how God gave her to us.’” Erica shows no sign of knowing that she could ever be perceived as an embarrassment. “She realizes that she can’t run as fast as other kids. Or she can’t jump rope the way other people do. But she’s never asked me why. Erica is, ‘If you’re good to me, I’ll be good to you.’ Part of me wants her to be aware, and the other part is, well, if she’s aware, she won’t be happy.”
Angelica had been deeply committed from the first to finding meaning in her experience, and she came to see Erica’s disability as an occasion for her own moral growth. When Erica was nine, Angelica developed breast cancer. “Having Erica made me stronger to deal with that,” Angelica said. “I became this stronger person because of her.” Trinity Church is only a few blocks from Ground Zero, and Angelica was there on 9/11. She kept her cool in the midst of the chaos, and for that, too, she thanks Erica. “God makes these things happen to us sooner rather than later, because maybe our role will be to help others and to grow from this experience,” she said. “That’s what I feel my ministry is now, to let folks know and invite the
m to my home, to have conversations. I couldn’t stop the planes from coming. I couldn’t stop my illness or her condition. You can’t stop the future.”
• • •
In her memoir, Expecting Adam, Martha Beck writes, “If you’ll cast your mind back to high school biology, you may remember that a species is defined, in part, by the number of chromosomes in every individual. Adam’s extra chromosome makes him as dissimilar from me as a mule is from a donkey. Adam doesn’t just do less than a ‘normal’ child his age might; he does different things. He has different priorities, different tastes, different insights.” Beck writes of the transformations her son has wrought in her own life. “The immediacy and joy with which he lives his life make rapacious achievement, Harvard-style, look a lot like quiet desperation. Adam has slowed me down to the point where I notice what is in front of me, its mystery and beauty, instead of thrashing my way through a maze of difficult requirements toward labels and achievements that contain no joy in themselves.”
Children with Down syndrome tend to retain what the experts call babyfaceness. These children have “a small, concave nose with a sunken bridge, smaller features, larger forehead and shorter chin, and fuller cheeks and rounder chin, resulting in a rounder face.” A recent study found that both the register in which parents speak to their DS child and the variances in pitch resembled the voice patterns parents use to speak to infants and young children. So the infantilizing comes from parents who don’t think they’re doing it, in response to a biological facial structure that they may not consciously register as meaningful. Intellectual inequality places certain limits on intimacy for parents, yet studies show that fathers of DS children spend much more time with their affected children than most fathers spend with their typical children.
Far From the Tree Page 29
