Barbara and I met as students at Northeastern University, fell in love, and got married in our early twenties — then waited ten years before having kids. Partly this was a matter of circumstance: I wanted to put off having a family until I had gotten my master’s in American history at Boston University, a five-year slog through night school. Then my parents became terminally ill, first my father, followed by my mother; and I, as an only child, spent most of my nonworking time taking care of them. After my mother’s death — too soon, really, even to begin to process all that had happened — I started a quarterly magazine in Boston’s northern and northwestern suburbs, an ill-conceived venture that flopped in less than a year. That was followed by a year of personal struggle: unemployment, deep depression, and gradual recovery.
Barbara and I have always had something of an odd-couple relationship: I am loud and talk too much; she is quiet, and there are times when she hardly talks at all. I run and hike; she’d rather go to the mall. I like Bob Dylan and Bruce Springsteen; she prefers Simon & Garfunkel and George Winston. What we share — what we’ve shared almost from the time we met — is a fierce devotion to each other, a devotion that’s all the stronger because it’s hard to explain. She got me through this dark period, picking me up at a temporary job I had and driving us to the beach with bag lunches, slowly, gradually, pulling me through it. Some marriages can fall apart during such times; ours grew stronger.
When we were finally ready to start a family, we discovered that there’s a lot more to getting pregnant than just having sex — and that staying pregnant is even harder. After a year of trying, Barbara finally became pregnant, only to suffer a miscarriage sometime during the winter of 1989-90, an event I am ashamed to say that, because of my own preoccupations, I barely remember with anything other than a vague feeling of relief.
By the spring of 1990, though, she was expecting again, and this time we were both ready. Timothy Daniel Kennedy was born on January 15, 1991. He was so strong, and his birth so uneventful, that a nurse actually suggested in the delivery room that Barbara get dressed and go home. Two weeks later, I began work as a copy editor at the Boston Phoenix, a venerable alternative weekly newspaper. The angst of the previous year had given way overnight to the American dream: a good job and a brand-new baby.
Timmy’s health was remarkable, and I can honestly say that I never saw it as something we were entitled to. For most of the 1980s, I had worked as a reporter for the Daily Times Chronicle, in Woburn, Massachusetts, and covered a landmark federal trial over the dumping of toxic waste, a case made famous in Jonathan Harr’s 1995 book, A Civil Action. During those years I became friends with Anne Anderson, whose insistence on finding out why her son Jimmy had gotten leukemia — and why he’d died — was the driving force behind the lawsuit. Anne was and is a friendly and kind woman, but her sadness was never far from the surface. My experience in Woburn taught me never to take any child’s health for granted. I marveled at Timmy’s strength and looked at it as a gift. He breezed through check-ups. He was walking by one, running not long after that, a loud, curious presence, disdaining naps for fear that he would miss something, scampering around the kitchen table and laughing while Barbara and I ate our supper.
Barbara had always wanted three kids; I, having grown up without brothers or sisters, was a bit skeptical, but I certainly wanted two. Barbara came from a big family: she had two brothers and a sister, and they and her parents — along with spouses and grandchildren — all lived within a few blocks of each other in Colonie, New York, a suburb of Albany. Barbara was the only member of her extended family who’d moved away — who’d escaped, we liked to joke. At Tanski family gatherings, it was Barbara who was loud and boisterous, and I who was quiet and withdrawn. Big families were alien to me. Yet I had some vague regrets at not having a brother or sister to talk to, especially with my parents gone. I figured we’d go for two and then decide later on a third. Barbara figured that having a third child was something that would take care of itself.
“I could have twins,” she would tell me, laughing. “My father was a twin.”
“Well, that would be okay,” I replied.
“Or we could have two — and then I could have twins.”
“Jesus . . .”
One fact was indisputable: we couldn’t have child number three (or four) until we’d had number two. And having waited as long as we had for Timmy, we knew we were running out of time. Less than a year after Timmy’s birth, we were expecting again; but that pregnancy, too, ended in miscarriage. By now we were in our mid-thirties, with conception and pregnancy becoming more difficult with each passing year. With the help of Clomid, a fertility drug, and daily temperature monitoring, by early 1992 Barbara was pregnant once more. We hoped for the best and set our sights on August, the due date.
Yet even though we didn’t know at the time precisely what was going on, there were signs throughout that something was not quite right. Barbara’s pregnancy with Timmy had been almost entirely without complications, but with Becky it was one thing after another. Because of Barbara’s two miscarriages, her obstetrician put her on progesterone, which Barbara had to administer to herself in the form of vaginal suppositories. Next, it was discovered that she had placenta previa — that is, the placenta was partially blocking the cervix, a situation that could result in dangerous bleeding and that would require a Cesarean section. Fortunately, and surprisingly, the placenta moved on its own accord, and no C-section was necessary.
In the final weeks, Barbara grew absolutely huge. With Timmy, her size had stayed well within normal range, but with Becky she swelled with amniotic fluid — characteristic, we were later told, of a genetic bone condition, although at the time her obstetrician seemed unconcerned. That expanse, in turn, gave Becky so much room to swim that she never really moved into position for delivery. Thus, Barbara had to be induced with Pitocin, a synthetic version of oxytocin, the hormone that causes contractions. Barbara got contractions, all right — violent, nauseating contractions that doubled her over while she walked up and down the hospital corridor with an IV drip in her arm.
Becky’s dwarfism was actually detected before she was born, though no one realized it. A routine ultrasound showed that Becky’s arms and legs were shorter than expected — or, as the radiologist put it, her head and torso appeared to be at thirty-six weeks, whereas her arms and legs were at twenty-eight weeks. He chalked up the anomaly to getting a “bad angle” because of the excess amniotic fluid, which made it difficult for him to move Becky into position for an accurate picture. We accepted that explanation; at least, I have no memory of having any serious doubts.
Becky was born at Beverly Hospital late on a Saturday afternoon. She had inhaled meconium — fetal poop — during delivery and had to be rushed to the special-care nursery lest she come down with pneumonia. She was a beautiful baby, eight pounds, two ounces, nineteen and a half inches long — just a half-inch shy of her brother’s length at birth. Certainly, at least at first, there was no suspicion that there was anything wrong other than the meconium in her airways and a touch of hypoglycemia.
I went home for a few hours to check on Timmy, who had been staying with neighbors. By the time I returned, everything had changed. A doctor from Boston, filling in at the special-care nursery for the weekend, was concerned about the size of Becky’s head. It was, she said, clearly larger than normal. It could be brain damage; it could be dwarfism. We were horrified by the prospect that our brand-new little girl might have something seriously wrong with her, and — no doubt as a self-defense mechanism — I have completely forgotten the chain of events that led to brain damage being ruled out. I just remember being profoundly grateful that the worst that could happen didn’t happen. Which left the possibility of dwarfism, a notion as exotic and strange to us as if we’d been told she was from another planet.
Timmy had been a perfect-looking newborn; his birth was so easy that he didn’t even have the misshapen head common with justdelivered babies. Barbara and I both knew that Becky, though reasonably normal-looking, was — well, off a bit. It was hard to tell whether her arms and legs were shorter than they should be, but there was no doubt that she had an unusual head: large and flat, with a triangular appearance when you looked down at the top. That evening, I picked up Timmy from the neighbors’ and, after putting him to bed, anxiously called Barbara’s obstetrician and told him of the concerns that had been raised. He doubted the possibility of dwarfism, but my feeling of relief did not extend much past the moment when we ended our conversation and I hung up the phone.
Achondroplasia in a newborn is subtle, and in some cases it can take weeks or even months before suspicions are raised and a diagnosis is made. If it hadn’t been for that one doctor in the nursery, I think I would have believed — willed myself to believe — that Becky was fine. I suspect Barbara would have asked more questions. To this day she recalls sitting with Becky in the nursery just seven hours after she’d been born and wondering about her slightly off-kilter appearance. “I remember holding her that night and knowing there was something wrong,” she says. Still, it could have been quite a while before we got the right answers. Dwarfism is not, after all, the sort of thing a local hospital runs into every day.
What is normal? More specifically, what is a genetic difference and what is a genetic defect — and how do you distinguish between the two? Does it matter? In a word, yes. In language and in the real-life attitudes that language reflects, differences are good, defects are bad; differences are to be nurtured, defects eliminated. To eliminate a defect that causes real suffering is obviously an unalloyed good. But if one person’s defect is another person’s difference, then the moral calculation changes considerably. And if the defect/difference can’t be eliminated without also eliminating the person, well, that’s another order of magnitude altogether.
Some of these judgments are easy to make. Consider eye color. Brown is dominant and blue is recessive, meaning there are more people with brown eyes than blue. I’m oversimplifying, and I’m not even mentioning those whose eyes are green or gray or utterly unique, but indulge me. If brown eyes are the default mode for the human race, are people with blue eyes somehow defective? Of course not. Blue eyes work exactly the same as brown ones. Mine happen to be blue. Of far more significance, though, are the facts that I’ve had to wear glasses since I was nine, that middle age forces me to switch back and forth between two pairs when I’m reading, and that an allergy often makes my eyes dry and itchy and uncomfortable. Eye color? Who cares?
Or take race. Through some combination of genetic attributes, people of European, African, and Asian ancestry all look quite different — from the pigmentation of their skin to the shapes of their noses and eyes to the color and texture of their hair. But despite the efforts of some to pretend otherwise, we know that racial differences are morally and intellectually neutral, meaningless — and of little importance when compared to other aspects of our genetic make-up. Scientists say that the genetic differences between Europeans and Africans, for instance, are less pronounced than the differences among various African ethnic groups. Obviously the genetic differences that are the most visible are not necessarily those that are the most profound, or that help determine who an individual is.
Now turn the needle over to the other end of the dial. Down syndrome, quite clearly, is a genetic defect — a condition created by an extra chromosome that causes mental retardation and myriad other problems, such as heart abnormalities, hearing deficiencies, and short stature. (Some reference books actually refer to Down’s as a type of dwarfism. That’s not necessarily wrong, but it seems beside the point.) People with Down’s often enjoy good, meaningful lives, especially when brought up in a loving home environment rather than the institutions they were typically warehoused in several generations ago. Still, no reasonable person would call Down syndrome a mere genetic difference on the order of eye color or ethnicity.
The same is true of genetic defects that do not manifest themselves until adulthood, such as those responsible for Huntington’s chorea (the disease that killed Woody Guthrie), amyotrophic lateral sclerosis (affecting Lou Gehrig, the physicist Stephen Hawking, and Morrie Schwartz, of Tuesdays with Morrie renown), and certain types of breast cancer. No one would call these mere genetic differences. And even though you could construct an argument that Gehrig, Schwartz, and Hawking have had a more significant and lasting legacy than they would if they’d never gotten ALS, it is nevertheless true that their genetic defect had an enormous, and damaging, effect on their lives.
Finally, turn the needle back to the middle. This is the part of the dial occupied by dwarfism. Difference or defect? Diversity or pathology? It is a politically charged debate with consequences not just for the dwarf population, but — in an age of prenatal testing and the promise (and threat) of genetic engineering, at a time when our increasing acceptance of difference is matched only by our growing ability to eradicate it — for all of us.
Nowhere does this debate rage louder than within the dwarf community itself. On the Dwarfism List, an Internet forum with nearly eighteen hundred subscribers that I had a hand in founding and continue to help run, there is little agreement on the difference/defect divide. Some frankly define dwarfism as a genetic defect. Others are quick to respond, “God doesn’t make mistakes.” This is supposedly the show-stopper for the religiousminded, though it conveniently circumvents the matter of whether, say, infants born without brains are evidence that God occasionally takes a day off.
The whole reason for the debate, I suspect, is that although dwarfism is a disability (in itself a controversial assertion in some circles), it’s a different kind of disability. In contrast to a person who is blind, or deaf, or uses a wheelchair to get around, a person with dwarfism — in most instances, anyway — is fully in possession of all of her physical abilities. A dwarf looks not so much like a person with a disability as she does a member of a different race, or even a different type of human. As the medical anthropologist Joan Ablon writes:
Within the context of populations labeled as physically different, the situation of the dwarf is made more complex and ambiguous for the average-sized perceiver than is that of a person with a missing limb or an impaired sensory organ, since in the case of many dwarfs, there is nothing really “wrong” or dysfunctional about any one part of them. The person is just smaller, or in the case of disproportionate dwarfs, the body is in a different form, but it is all there, and all part of a piece, with each part fitting into a harmonic, although different, whole.
Thus, according to Ablon, dwarfism is a disability, but it’s a socially constructed disability. People with dwarfism are disabled not by the lack of some physical function, but by a culture that perceives there is something wrong with them — “something wrong, but not too wrong,” Ablon writes — and that discriminates against them by denying them opportunities that it routinely grants to the average-size majority. Such discrimination can take the form of refusing to alter the human-made environment — lowering door handles, elevator buttons, toilet seats — in order to accommodate dwarfs’ short stature. Or it can be more explicit: refusing them a job or admission to a school, or staring and pointing and laughing at them in public places.
But wait. Most disabilities, not just dwarfism, are socially constructed to a greater or lesser degree. It seems intuitively correct to say that a dwarf is not disabled in the same way that a blind person is disabled, but is that really true? For instance, if an ATM is so high that a little person can’t reach it, how is that any different from a blind person’s being unable to see it? If a deaf person attends a lecture and cannot hear, then he is disabled; but if there is a sign-language interpreter standing next to the speaker, then his disability disappears — or becomes meaningless, which is more or less the same thing. For some years now, a segment of the deaf community has denied that deafness is a disability of any kind. Activists have sought to elevate American Sign Language to the level of, say, English or French, and have denounced cochlear implants — surgically inserted devices that restore hearing in certain types of deafness — as the cultural equivalent of genocide. Personally, I think a middle position is appropriate. Deafness, like blindness or paralysis, is a real, physical limitation. But thinking about it primarily within its social context — a context that the hearing majority has the power to change — helps us create a better, more inclusive world.
Dwarfs, too, have real physical limitations. They aren’t just short. They aren’t just disproportionate. They don’t just walk differently. They are disabled, in objective fact as well as cultural theory. The most dramatic example is that the opening inside a dwarf’s spinal column is barely big enough to accommodate the spinal cord. In some cases — particularly with advancing age, but sometimes in young children — “barely big enough” gives way to “too small,” and the only way of preventing paralysis or even death is to saw the spinal column open and remove chunks of vertebrae. Dwarf adults sometimes suffer through years of tingling and weakness and pain, trying to put off surgery as long as possible; it certainly isn’t the sort of thing anyone would want to go through twice, though some do. And there’s more, much more. Dwarfs can’t extend their arms fully at the elbow. Children tend to get bowed legs, which can make walking difficult and painful, and which has to be corrected by surgery. Some dwarfs, especially kids, have hydrocephalus, “water on the brain.” In most cases it’s mild enough to warrant nothing more than monitoring and measuring. But in a few rare instances, the condition is severe enough that a shunt has to be surgically inserted, draining excess fluid from the skull cavity to the abdomen. And — as we were about to learn with Becky — sometimes, again mainly with kids, the airways are so small that they can get easily overwhelmed by a common respiratory virus, turning what should be no more than a bad cold into a life-or-death struggle.
Keep in mind that I’m talking only about achondroplasia. As I observed earlier, at least two-thirds of all dwarfs are “achons,” as they are sometimes called. But something like two hundred different types of dwarfism have been identified, some of them unnamed and specific to one individual, some quite disabling. People with the most common types of dwarfism other than achondroplasia — diastrophic dysplasia, pseudoachondroplasia (despite its name, not genetically related to achondroplasia at all), and spondyloepiphyseal dysplasia congenita (known simply as SEDc, or SED) — often have to undergo numerous orthopedic surgeries from infancy on. Some can only walk short distances, using crutches, scooters, and wheelchairs to get around.
So, yes, dwarfism, even achondroplastic dwarfism, is a disability, and not just a socially constructed one. But it’s a difference, too, and many within the community take great pride in that difference. Ruth Ricker, an achondroplastic dwarf and a past president of Little People of America, goes so far as to say that though she would like to see medical advances eliminate the complications of dwarfism, she would object to the elimination of the short stature that is its most obvious characteristic. “To change the dwarfism itself, as in the height — I think it would be hard for many of us, psychologically, to say we’d do that, because it’s so intertwined with what makes us us,” she once told me. “It would deny an integral part of myself that I have some pride in. It could be the end of achondroplasia.”
Thus the answer to the “defect or difference?” conundrum is: both. Each of us has something like thirty thousand genes, and random mutations are not uncommon. It’s just that the effects of the mutation that causes dwarfism are so obvious. As with the genetic difference that causes one person’s eyes to be brown and another’s blue, the mutation that causes dwarfism says nothing important about the individual who has it. But as with the genetic difference that causes Down syndrome, or Lou Gehrig’s disease, it is indeed, a mistake, an error, a cosmic typo imprinted on each of the many billions of cells that the average human body contains.
Once, someone posted a message to the Dwarfism List saying something to the effect of I am not a mistake — a variation of “God doesn’t make mistakes.” Someone else posted a response that I think got perfectly at the difference/defect divide. I’m paraphrasing, but it went pretty much like this: Of course you’re not a mistake. People aren’t mistakes. On the other hand, genomes can contain mistakes, and dwarfism is clearly a mistake. But we are all more than the sum of our genomes.
Becky recovered quickly from the meconium and hypoglycemia and came home within a few days of delivery. We received final word on her condition shortly thereafter. Barbara and I were summoned to our pediatrician’s office, where we were given a brief overview of achondroplasia and a pamphlet assuring us that Becky would likely enjoy a reasonably normal life. I mainly just looked at the photos in the pamphlet of dwarf kids and adults and tried to imagine how Becky would fit into those pictures. We were also offered psychological counseling, which we turned down, and an appointment with the geneticist, which we accepted.
Some people report having a hard time adjusting to their child’s dwarfism. I certainly can understand that. But for Barbara and me, the fall of 1992 wasn’t a time of terrible angst, anxiety, or recriminations. We talked about this strange new reality that had been introduced into our lives, but we had no idea of what to expect. And in our ignorance, we chose to believe that Becky would be fine — just really, really short.
In part, I attribute this to the positive picture that had been painted for us by Becky’s doctors, a picture very different from what would have been offered us a generation earlier, when parents were often informed that their dwarf children might be mentally retarded and would likely not live long. Soon after Becky had been diagnosed, I looked up achondroplasia in the Encyclopedia Britannica at our town library — and was shocked to read that many children die during their first year. But the encyclopedia was ancient; in any case, it was so out of sync with what we had been told, and with what I wanted to believe, that I just put it out of my mind. In part, too, I attribute my outlook to the depression I had recently recovered from. Feeling like I’d only just made it to the other side, I was determined not to slide back. Barbara, focused on the task at hand, was concerned about Becky’s future, but was far more wrapped up in taking care of her baby’s needs. Becky appeared to be fine, Timmy was doing great, so why worry?
I’ve read and heard stories about parents who actually go through a phenomenon that Joan Ablon and others refer to as mourning the loss of the perfect child. But that really doesn’t get at what we were going through that fall. It just wasn’t that dramatic. If Becky’s physical differences were more obvious, if her disabilities were more serious, if her ability to think and to love were at issue, things might have been different. Barbara says she mourned, but for Becky rather than for herself — for the discrimination she knew she’d encounter one day, for the stares and giggles and teasing that were sure to come. One of Barbara’s high-school classmates was a dwarf, and they’d worked together on a studentrun television newscast. So Barbara had more-concrete knowledge than I of the difficulties that dwarfs must face.
But as I would soon learn, my idea of dwarfism did not match the reality of dwarfism. I wasn’t ready yet, but I was about to begin my real education in what it means to be a dwarf. It’s an education that will never be finished, and that will always be hindered by the fact that, as an average-size father, I’m on the outside looking in. But at least I began to realize what I didn’t know — and that what I didn’t know could kill my little girl.
For Barbara and me, naming our daughter Rebecca Elizabeth was an act of affirmation. We had decided on that name sometime earlier for our baby if it turned out to be a girl. There was no special significance to “Rebecca;” we just liked it. “Elizabeth” is the middle name of Barbara’s sister, Mary. When Becky was born, we went ahead and named her Rebecca Elizabeth without so much as a discussion. We were not going to save it for a future daughter with less-uncertain prospects. We were sending a signal — to ourselves as much as anyone — that this was the daughter we’d always wanted.
But the daughter we’d always wanted was beginning to have problems, big problems — far bigger than we realized until it was almost too late. Becky was a content and happy infant, smiley and engaged, easier than Tim had been at that age, but also more fragile. The outsize dimensions of her head, her weak neck, and her poor muscle tone gave her a floppy quality, and she had to be held just so lest she be hurt. And that was the least of it. She had a perpetual cold, and, since she couldn’t breathe through her nose very well, she couldn’t breast-feed with much success. Barbara had to give up when Becky was around four months old. At night, in her crib, the top of her head would break into a cold sweat. She’d arch her neck way, way back, as though she were trying to find a position where she could get enough air in her lungs — which, we later found out, was exactly what she was doing. Her pediatrician, Dr. Robert Krachman, tried several antibiotics, none of which seemed to do any good. He x-rayed her lungs and found that they were clear — something he couldn’t explain, given that she sounded like she was congested. Finally, and to his everlasting credit, he threw up his hands and suggested that Becky see a specialist.
Once a month, Dr. Daniel Shannon, a pediatric pulmonary specialist at Boston’s Massachusetts General Hospital and a leading authority in his field, would travel fifteen miles north to Beverly Hospital, where he would see patients in a clinical setting. Barbara took Becky to see Dr. Shannon in January. As Barbara described it, he took one look at Becky, one look at the results of a blood test she’d had done prior to the clinic, and said she almost certainly need a tracheostomy. Her respiratory system, he explained, was so tiny that she was unable to expel carbon dioxide as efficiently as she should. As a result, the CO2 was rising to dangerous levels in her blood. Her heart, brain, and lungs could be damaged; she could even die if she caught a cold. Becky’s problems were not so acute that she needed to be hospitalized immediately, but he recommended a follow-up within the next several weeks.
That follow-up never took place. On a bitterly cold Saturday night in February, we took the kids to the mall just to get out of the house and hang out for a while. Timmy enjoyed running around a toy store. Becky alternated between the carriage and Barbara’s arms. We ran into a friend and talked, getting home later than we had wanted. Becky had yet another cold and was exhausted. So were we all. The next morning Becky seemed to be filling up again, so Barbara took her to the “urgent care” department of the clinic that our HMO ran. They gave her a quick exam and told Barbara to get her to Mass General as soon as possible. She drove to Boston and took Becky to the emergency room; from there, Becky was admitted to the pediatric intensive-care unit (PICU). The diagnosis: respiratory syncytial virus, or RSV.
Now, in most kids, RSV causes nothing more than an unusually bad cold. It’s potentially serious; according to the Centers for Disease Control and Prevention, it causes infections of both the upper and lower respiratory tracts, and can lead to pneumonia. But nearly all children get RSV at some point, and nearly all of them come out of it fine. In Becky’s case, though, the copious amounts of mucus that RSV produces clogged airways that, because of her dwarfism, were already so tiny that she couldn’t breathe as efficiently as her body required. Now her blood was both starved for oxygen and loaded with carbon dioxide. Her life was in danger.
RSV is perilous to any child who’s younger than six months. Another baby in the PICU, a girl, had to be put into a chemically induced coma so that doctors could force a respirator down her throat. Becky was sick, very sick; but she proved to be a tough little kid, and she began to rally before Dr. Shannon had to do anything quite so drastic. Barbara was at Becky’s side almost constantly. I had driven Tim to Albany to stay with Barbara’s sister, Mary Zysinski, so that I could spend most of my non-working hours in the PICU, too. We were in a weird state of limbo, a bubble almost. The PICU is an alternate universe; at any time of the day or night it is as bright as noon, with nurses and doctors rushing about. All around us, kids were desperately ill. One little boy died after his liver transplant failed. Others hovered somewhere between life and death. To a certain extent we were removed from that. Becky, though a long way from well, was in no immediate danger; she mainly needed to be monitored closely while we figured out the next step. Whenever I visited, I experienced a combination of anxiety over Becky’s condition and guilt over how much worse the other parents had it. I felt like an interloper. Yet there was no question that Becky was where she needed to be.
During the next few weeks Becky kept improving. But the level of oxygen in her blood remained too low, and the CO2 remained too high, even though she was getting extra oxygen through a tube under her nose. It wasn’t just that her airways were too small; it’s that, when she slept, her trachea would nearly close, creating an obstruction, which, in turn, caused sleep apnea. Other characteristics of achondroplasia combined to worsen her breathing difficulties. Her ribcage was small, which meant that her lungs couldn’t inflate fully. Her face was (and is) unusually flat, giving her tiny sinuses that easily become congested. An MRI was taken to make sure that Becky’s foramen magnum — that is, the top of the spinal column, where it meets the skull — was not pinching and squeezing her brain stem, a rare but by no means unheard-of problem for kids with achondroplasia. Such a complication can also cause apnea, thus mimicking some of Becky’s symptoms. It was a tight fit, as it is with all achon kids, but it wasn’t too tight. She wouldn’t need spinal surgery. Still, a tracheostomy loomed as increasingly likely.
I didn’t doubt that Dr. Shannon knew what he was doing, and it was of no small significance that he’d told us he had some experience in treating dwarfs. But Becky’s life and future were at stake, and I wanted to know more before agreeing to a trach. I dug out the material on Little People of America that the geneticist had given us. The phone numbers and contact information were out of date, but one call led to another until, finally, I was put in touch with Ruth Ricker, at that time LPA’s senior vice president, who, I learned, lived in Boston, barely a block from the Phoenix’s offices. She agreed to pay us a visit. On a Saturday morning, a few hours before our daily trek back to the hospital, she pulled into our driveway and jumped out — down would be more accurate — carrying a bag of muffins and waddling toward our back door. Ruth stands a shade under four feet, at least a half-foot shorter than what I’d expected.
The experience was disconcerting, but it gave us reason to hope, too. We learned that Ruth, like Barbara and me, had gone to Northeastern; that she held an important job in the civil-rights division of the U.S. Department of Education; and that, like us, she followed the Red Sox and politics. From all appearances, Ruth had the kind of life we wanted for Becky. Here was proof that it was possible. If only we could get her well.
Ruth also brought something of more immediate importance: a recommendation that we contact Dr. Cheryl Reid, a pulmonary specialist from New Jersey who was a member of LPA’s medical-advisory board, a group of physicians who specialize in treating the complications of dwarfism. Dr. Shannon was agitating for us to make a decision on the tracheostomy; Barbara was ready, I wasn’t. I contacted Dr. Reid, and sent all of Becky’s records to her after she agreed to review them. Several days later, she gave me the second-best news I could have heard: that Dr. Shannon knew exactly what he was doing, and that we should proceed with the trach. (The best news, of course, would have been that Becky didn’t need a trach, and that we should get her away from that nut Shannon ASAP.)
The surgery was scheduled, then postponed when Becky caught a bug unrelated to the RSV. Finally, on the afternoon of Friday, February 26, 1993, Becky was wheeled into the operating room. The operation was performed by Dr. Michael Cunningham, an ear-nose-and-throat specialist at the Massachusetts Eye and Ear Infirmary, which is affiliated with Mass General. I was scared, anxious to the point of lightheadedness; Barbara was outwardly calm, inwardly in agony. And our feelings were only amplified by what was going on around us. Terrorists had attacked the World Trade Center for the first time that afternoon, and we watched CNN in the waiting room as the injured were led to safety. Closer at hand, immediately after Becky’s surgery we and other anxious parents were shooed out of the recovery room to make way for a young gunshot victim; he later died, as I recall.
Amid this chaos, Becky’s surgery went well. But seeing her afterward was a shock. A tube was emanating from a freshly cut hole in her throat, which was in turn connected to a hose that led to a CPAP machine (“CPAP” stands for “continuous positive airway pressure”), a loud, monstrous-looking device that made it easier for her to breathe while she was adjusting to the drastic change in her respiratory system. The sight of our beautiful baby in such a state was emotionally overwhelming. I was numb; I looked, but I’m not sure I saw, or believed.
Meanwhile, we worried about the effect this was all having on Tim. When I’d brought him to Albany, I was sure he’d be there only a week. He was two years old, just learning to talk, and absolutely thrived on attention from his parents. At the end of that first week, when we realized we weren’t ready for him to come home yet, I drove to Albany to spend the day with him. He was overwrought and threw an eleven-on-a-scale-of-ten tantrum at McDonald’s, behavior that was very unlike him. That night, driving back on the Massachusetts Turnpike, it began to snow, hard, and my car, a seven-year-old Corolla, sputtered out. I pulled over into the breakdown lane in some nether region between Springfield and Worcester, cursing, thankful only that Tim wasn’t with me. This was the pre-cellphone era, and not a state-police cruiser was to be seen. To my grateful astonishment, I was able to restart the car after about a half-hour, and from there eased it to Mass General for a late-night visit with Becky and Barbara. After another week, it was clear that Becky’s hospital stay was going to be a long one and, since Tim couldn’t stay in Albany forever, I brought him home. Mainly, he stayed with friends and neighbors, but at least he got to spend some time with us.
Becky was in the PICU a total of five weeks — three before her surgery, two after — followed by three weeks on a regular pediatric floor. She was gradually weaned off the CPAP machine, though she continued to need oxygen. Eventually, her personality began to re-emerge, but there were aspects of the new Becky that were unnerving — none more so than her inability to make herself heard. With the trach, air was circumventing Becky’s vocal cords, so even if she tried to make a sound, all that came out was a hiss. She laughed silently. She cried silently.
So did we.
During this time, the hospital staff began preparing us for the responsibility of caring for a baby with a tracheostomy, which, we were about to learn, was fairly daunting. We didn’t know how long Becky would even have the trach — two years was the best guess, though Dr. Reid had warned me that it could go on much longer than that. But we did know that Becky’s care was going to be phenomenally expensive, and that our HMO wouldn’t pay the full freight. It’s ironic. Not that many years earlier, we were told, babies with trachs were automatically sent to chronic-care hospitals, running up catastrophic bills that were routinely paid for by insurance companies. At some point someone wised up and said, Wait a minute. These kids can be cared for more cheaply, and will do much better, if they’re sent home. All they need is some nursing care and some equipment. But home nurses are not routinely covered by private medical insurance. So I was dispatched to our local welfare office for the sole purpose of submitting a Medicaid application that was certain to be rejected because of our middle-class income. After that, we could apply for a special state program that covered home health care. Our insurance company would foot the bills until then.
There was more, much more. Barbara and I met with a nurse at Mass General who showed us how to change Becky’s trach tube, how to suction it if it became clogged with mucus, and how to yank it out if there were an emergency. I was there, but I wasn’t; I kind of zoned out, watching and listening, but telling myself I would never be able to do that. And I was right, sort of. Other than learning how to use the suction machine to remove phelgm from her trach tube — an absolute necessity if I were to be with Becky for more than fifteen minutes — I kept myself at a safe remove from trach care, never changing or cleaning her tube or changing or even tying the shoelace-like straps that held it in place. Oh, I would help occasionally, but I was more than happy to let Barbara take the lead and pass it off to whichever home nurse was on duty if Barbara wasn’t around. For some reason I never felt competent enough to take charge, and was always afraid I would do something wrong, something to impede Becky’s breathing, something that would hurt her. It wasn’t rational or even particularly responsible. But I convinced myself that it was the best I could manage.
In early April, eight weeks after she’d checked in to the Mass General emergency room, Becky was ready to come home. We have a photo of her in her hospital room that day, strapped into one of those infant car seats that can be carried by a handle (not good for dwarfs because it scrunches their backs, but we didn’t know), a big smile on her face, a bluish plastic hose running from her trach to a portable oxygen tank. And we headed home, uncertain of the future, and of our ability to handle whatever that future was going to bring.