Watching Her Weight

Yoshie Furuhashi furuhashi.1 at osu.edu
Fri Sep 7 16:41:12 PDT 2001


The New York Times July 8, 2001, Sunday, Late Edition - Final SECTION: Section 6; Page 30; Column 1; Magazine Desk HEADLINE: Watching Her Weight BYLINE: By Lisa Belkin; Lisa Belkin is a contributing writer for the magazine.

Anamarie Regino, her nails painted pink to match the tiny butterfly barrettes in her hair, sits on the floor of her family's modest Albuquerque home, playing tea party. For most girls this would be a quiet respite of a game, but for Ana it is a struggle. Raising her arm to offer an imaginary cup of tea is, for her, like lifting weights. Standing up leaves her breathless. A short walk across the room is a hike. At 4 years old, standing four and a half feet tall, she weighs just over 110 pounds -- meaning she is three times heavier and 50 percent taller than an average child her age.

Heavy as she is, however, her ruddy face is thinner than it was back in August, when her photo, a portrait taken at Sears, ran in nearly every newspaper in the country. That was when the state wrested her screaming from her parents and put her in foster care, saying her life-threatening obesity was her mother and father's fault. She lost weight while living in foster care, but she also lost her desire to speak Spanish (her father's native language) as well as her faith that Mommy and Daddy would always be there.

In the three months between being taken from this cramped cinder-block home and being returned here, Ana was transformed from a little girl into a cause. Her story has touched off a high-volume debate about the reasons and consequences of childhood obesity. She has become a cause celebre for the National Association to Advance Fat Acceptance, which sees her case as a "threat to all the parents of fat children." She is the catalyst for a petition drive to change New Mexico's laws so children cannot be taken away so easily.

Until now, however, a controversial gag order kept the family silent. That gag order was lifted in January, when the state relinquished its legal custody of the girl, and now her mother, Adela Martinez-Regino, and her father, Miguel Regino, are having their say. It's a rather one-sided conversation, to be sure. Because of the family's plans to sue everyone from the state of New Mexico to the doctor who reported them, few of the other players in this tale are willing to be interviewed.

Anamarie's saga, as told by her parents, is that of a family struggling to cope with a child whose condition medicine is not able to cure and whose best interests the law cannot easily determine. "They don't know what's wrong, so they blame us," says Martinez-Regino, a fleshy, worried woman, sitting on the floor with Ana. "They treated her for four years, doctor after doctor. Not one of them could help. Then they took her away for months, and they still couldn't tell me what was wrong. They've played around with her life like she was some kind of experiment, and even now no one can tell me what is wrong."

It is late in the afternoon, and Ana pauses in her game for her daily snack. Her mother slices an apple into six sections, handing two of them to her daughter. For a moment I suspect that this calorically correct nibble is for my benefit, but Ana's blase reaction makes me think she is used to such tiny portions. When her mother says, "You can have some more at dinner," Ana simply nods, then returns stone-faced to her game, feeding imaginary tea and apples to her doll.

At the very start of her life, Anamarie was a long, skinny baby. She weighed 6 pounds, 13 ounces when she finally arrived via Caesarean section, after more than 24 hours of difficult labor. Her head had become stuck in the birth canal, and she still has an arched palate, a slightly flattened nose and a drooped eyelid to show for it.

Miguel Regino, now 54, has five grown children from a previous marriage, but Adela Martinez-Regino, now 33, was a mother for the first time. Nevertheless, instinct told her something was wrong. It was Adela who began taking Ana from one doctor to the next, looking for answers. "She was drinking 10, 12 bottles a day and still wanting more," says Martinez-Regino, whose own mother cared for Ana during the day so that Martinez-Regino could return to work as a counter agent for Mesa Airlines. "The doctors said, 'Don't worry, she'll tell you when she's full,' but she kept drinking."

At 8 months, Ana weighed 38 pounds and was referred to an endocrinologist, who said, "Water down her formula, she's just going to be a big girl," Martinez-Regino says. When Ana was 2, her father had to quit his job as a cabinetmaker and stay home full time because Ana could not walk (her bones and muscles were not strong enough to support her weight of more than 70 pounds) and her grandmother could no longer lift her.

Her evolution from chubby to fat to horrifyingly obese is displayed in a line of professional photos along one wall of the Martinez-Regino home. To her mother, she is beautiful, but Martinez-Regino is not so blind that she does not see what others see. She knows that the sight of her daughter makes strangers want to stare and avert their eyes at the same time. And she realizes that the girl is not bubbly and sweet, but often clingy, lethargic and flat. Ana's speech is that of a much younger child, and she is difficult to understand. As she sits on the floor beneath the photos, playing with her doll, it is hard not to wonder whether these traits, taken together, might explain all that has happened to her in the past year. Doctors are as flawed as the next human being, and they are drawn to endearing patients. But Ana does not warm easily to strangers, so none of her doctors ever embraced the youngster or her family, meaning they knew her only as a chart, as a collection of weights and measures, never as a complicated little girl.

Over the past four years, Ana has been to countless doctors who have offered a spectrum of theories about what might be wrong. The first of these was Prader-Willi syndrome, a rare chromosomal disorder in which children can become so ravenous that parents have to padlock the refrigerator. Like Ana, Prader-Willi children are often obese and tend to speak, walk and toilet-train late. She clearly fits that description; she learned to walk unassisted while in foster care, and she was not toilet-trained until her 4th birthday. Prader-Willi children are also prone to temper tantrums and suffer from sleep apnea, both of which also apply to Ana. However, Prader-Willi patients usually have feeding problems as infants, which Ana certainly did not, and they are short for their age, whereas one of the most puzzling things about Ana is that she is significantly taller than a 4-year-old should be.

Ana has had countless tests. A bone scan, her mother says, showed her to have "the bones of a 4- or 5-year-old when she was a year old." Another test, to check for seizures, involved "wrapping her up like a mummy so she wouldn't kick out." But according to Martinez-Regino, it showed nothing. "None of the tests ever showed anything," she says.

Almost as numerous as the tests were the variations in Ana's diet. She was limited to 1,200 calories a day, then 1,000 calories, then 900 calories and finally 550. Martinez-Regino says she followed each diet to the letter. For several weeks last summer Anamarie was put on a liquid diet on the advice of a nutritionist at the Prader-Willi Syndrome Project at an Albuquerque hospital. "Here's what she ate," her mother says, plunking two tiny cans down on the counter, remnants of a failed experiment. "Two Kindercal drinks, 250 calories, vanilla." Her treatment was further complicated by the fact that she went through several doctors; she was referred and transferred from one pediatrician to another.

What Martinez-Regino and her husband only slowly came to realize was that many of Ana's doctors thought her parents were trying to hurt her. Every time she was admitted to the hospital she lost weight, the doctors noticed, and when she returned home she gained it back. Her parents say they believe that this was because she constantly walked the halls of the hospital, getting exercise she couldn't get on the uneven streets and sidewalks of her neighborhood. To her doctors, however, this was evidence that the parents were not following orders and were endangering their daughter's health.

On June 8 of last year, Ana was the heaviest she had been -- 130 pounds, at an age when most children weigh about 30 pounds. That was when she was hospitalized and put on her liquid diet and began to lose weight. By early July her weight had dropped to 123 pounds, and she was released from the hospital and enrolled in a day treatment program at Children's Psychiatric Hospital to work on her temper tantrums.

On July 5 an employee at that hospital saw her eating solid food that her family had brought her for lunch -- two containers of yogurt, a can of green beans, a serving of potato salad and chunks of watermelon -- and reported that fact to the Prader-Willi program nutritionist. Martinez-Regino explained that the lunch was a low-calorie substitute for the liquid diet, which Ana's parents had been instructed to continue at home but which had not yet been approved by her family's insurance company, Martinez-Regino says. But the doctors were skeptical, and unknown to her parents, they began checking Ana's stools for signs of solid food. On July 10, they found the evidence they were looking for. Martinez-Regino says that the night before the family went to a funeral and a young cousin slipped Ana a slice of ham, a slice of cheese and some raw vegetables.

According to Ana's medical chart, which the family has obtained through the court, that was the moment when her doctors began talking about taking the girl away. New Mexico law, like that of most states, requires medical personnel to report all cases of suspected child abuse, and, as an affidavit filed by the state's Children, Youth and Families Department explained, "Every physician and therapist involved with the family is in agreement that continued weight gain could cause fatal heart damage." In other words, if Ana continued on her trajectory, she would die. The only thing her doctors could think to do was to remove her from the home where -- for whatever reason -- she kept gaining weight.

The first that Adela Martinez-Regino heard of the plan was in mid-August. Her latest pediatrician, Dr. Monika Mahal, called the home and asked that Ana be brought to the hospital for some medical tests. Ana was checked into the pediatric unit, and on the night of Aug. 18, Mahal asked Martinez-Regino to join her in the playroom down the hall for a talk. It was common for Ana's mother to talk to doctors without her husband present; since his English is weak he defers nearly all these conversations to her. Waiting in the playroom were Loretta Pacheco, a nutritionist, and Catherine LaRoque, a social worker from the Prader-Willi Syndrome Project. They said that Ana would die if she did not lose weight soon, Martinez-Regino recalls, and that Ana should be put in foster care. (Mahal has since left her practice and moved out of state; her partner would not return phone calls asking for a forwarding number. Pacheco and LaRoque refused through a spokeswoman to comment.)

Martinez-Regino says that a fierce argument ensued, and that after about 20 minutes, she walked out. "One of them yelled at me, 'We're not done with you,'" she remembers. "I said, 'I'm done with you.'" Moments after she returned to her daughter's room, she says, Mahal came in and warned that "if I tried to take Ana out of the hospital they would call security."

The next few days, she says, are a blur. A social worker visited one morning, and Martinez-Regino took an instant dislike to the young woman "because she insisted on speaking to me in Spanish." (Martinez-Regino's first language is English.) "Something this important, I want to understand everything," she says, "and her English was perfect. But she decided that mine wasn't. She decided all sorts of things. She kept asking for phone numbers of my family in Mexico. I kept telling her I was born and raised here. My mother was born here. She wanted us to be ignorant foreigners so she could write that in her report." (The social worker, Liza Perez, has since left the department. A spokeswoman says state law "prohibits us from commenting on any case, in order to protect the child.")

The social worker's affidavit, filed on Aug. 25 with the Second Judicial District Children's Court, recommended that Ana be placed in foster care because her parents "have not been able or willing" to properly control her weight. The affidavit (which misspells Ana's name throughout) accuses the parents of risking their daughter's life by, among other things, ignoring her liquid diet. It then goes on to speculate that she may be a victim of Munchausen syndrome by proxy, a psychological disorder in which parents purposely harm their children in order to draw attention to themselves.

The charge infuriated Martinez-Regino. "If we are overfeeding her, then how come she is so tall?" she asks. "How come she had all her teeth by the time she was a year old? How come she has such thick hair, adult kind of hair? Can overfeeding do all of that?" But what rankled even more was the concluding paragraph, which hinted that "the family does not fully understand the threat to their daughter's safety and welfare due to language or cultural barriers." When Martinez-Regino read that, she says, "I knew they decided about us before they even spoke to us."

On the morning of Aug. 25, Ana's parents packed her clothes and explained to their 3-year-old that "you will be going to stay with some different people now, but Mommy and Daddy will come to visit." As a nurse wheeled the girl away from her hospital room in her specially reinforced stroller, "she kept screaming that she wanted her daddy to push her," Martinez-Regino says. "But we knew there were armed guards outside, so we couldn't do anything. It was so difficult to sit there and do nothing because you could hear her scream all the way down the hall."

Last February, in Indianapolis, Heather Andis pleaded guilty to a charge of child neglect in the case of her 5-year-old son, Cory, whose weight had at one point reached 138 pounds. In other words, Anamarie is not the only morbidly obese child to reach the attention of the state. But she is the only one to do so in New Mexico, which is second in the nation in the rate at which the child protective services department takes children from their families. And hers were the only parents who immediately went on "Good Morning America," resulting in press coverage as far away as Singapore and a crush of cameras and reporters at her Sept. 5 custody hearing.

Children's Court Judge Tommy Jewell barred reporters from the proceedings and imposed a gag order on all parties. By that time, the family had an attorney -- Troy Prichard, a folksy, self-assured father of four, who had offered his services pro bono after reading about the case in the newspaper. Prichard found the family a new doctor, Javier Aceves, an Albuquerque pediatrician who runs a practice filled with chronically ill children. Born in Mexico, Aceves was able to speak fluently to Ana and her parents in English and Spanish, which few of the family's previous doctors had been able to do. (I was the one who first alerted Prichard to Aceves's practice; I wrote a book about Aceves 10 years ago and mentioned him to Prichard when I called seeking an interview.)

On Aceves's watch, Anamarie's diet was broadened to include more solid food for a total of about 1,000 calories a day. She began losing weight. During her first two months in foster care, she lost 10 pounds, and at one point she was losing weight so rapidly that her daily calorie intake was increased to 1,200. She also benefited by sleeping with an oxygen machine at night to ease her sleep apnea, something that her mother had been advised to do but that caseworkers say was not done properly.

In late October, days before a hearing in which the state would be asked to show why the girl should continue to be separated from her parents, an agreement was reached between Prichard and the Children, Youth and Families Department. The state maintained legal custody of Ana, but physical custody was returned to her parents. Ana came home on Nov. 10 to a house decorated with purple and pink balloons. She wore a new pair of glasses, which had been prescribed while she was in foster care. She was welcomed back by her parents with a party, but the state's legal custody was not a small matter, and for months a rotating series of caseworkers sat on the couch in the living room, watching everything the family did.

In January, Ana was losing weight under the treatment plan worked out between her parents and the Children, Youth and Families Department, and Martinez-Regino had been evaluated by a psychiatrist who found no evidence of psychological problems like Munchausen syndrome by proxy. Satisfied, Judge Jewell dismissed the charges of abuse and returned legal custody to the girl's parents. He also returned their right to talk, which is how I found myself on the living-room couch (the same one that had been occupied by the ever-present caseworkers), hearing all that the family had to say.

Leslie Prichard, who is not only Troy's wife but also his paralegal and the other half of the Martinez-Regino legal team, slowly lowers herself into a recliner in one corner of her client's living room, then accepts an imaginary cup of tea from Anamarie. Leslie's left foot is immobilized in an ungainly splint, a result of a broken toe, caused when she collided barefoot that morning with Anamarie's towering medical chart. The file, which has sat on her bedroom floor for months now, is two feet high and growing. There is no telling how large it will get once the lawsuits start. The Prichards have announced their intentions to file suits this month against the state, the Children, Youth and Families Department and a number of Anamarie's doctors.

"What made them think they had the right to take her?" Leslie asks. Her question sums up what for the lawyers is the heart of the matter. Yes, Ana's doctors were required by law to report suspected abuse, she says, but can obesity really be called a form of abuse? And if this were a wealthy, white, professional family, would their child have been taken away?

"There were so many veiled comments which added up to 'You know those Mexican people, all they eat is fried junk, of course they're slipping her food,'" Troy Prichard says. "That's what they wanted to see."

Javier Aceves, Anamarie's new doctor, disagrees. His ear is well tuned to prejudice; he moved to Albuquerque from Houston because he did not find Houston welcoming to Mexican-Americans. But he says he sees no prejudice in this case. "With hindsight," he says, it "proved to be the wrong decision" to take the girl from her parents, but he says he completely understands why it seemed necessary at the time. "This is a very unusual child," he says. "It is not immediately obvious how best to treat her."

Anamarie is not obese just because her parents feed her too much, he says. It could be that she has a glitch in her metabolism, but if so it is not a condition known to science, because every test Ana has been subjected to has come back negative. She may have a syndrome that has yet to be identified, one that might explain not only why she is so heavy but also why she is so tall, and also why her teeth erupted early but her speech and other developmental milestones were delayed.

Aceves's own prediction is that the answer lies somewhere at the intersection of genetics and environment. In other words, she was probably predisposed to serious weight gain and was raised in a family where food was equated with love. He suspects that Ana's parents have, in the past, fed her more than they told their doctors and more, perhaps, than they even realized. "It feels good to feed a child," he says. "We are all guilty of that."

Whatever the cause, all that today's medicine can do in Ana's case is treat her symptoms with diet and exercise. "It all comes down in the end to calories in, calories out," Aceves says. "We need to find a diet she can live with and an amount of exercise she can do" to control her weight. Martinez-Regino says she is comforted every time Aceves admits he does not know what is wrong with Ana, "because all those other doctors thought they knew and they ended up blaming us." She is also confident that this doctor will not report her to the authorities, but she worries that someone else will. "We're always looking over our shoulder," she says. "Anyone could file a report and start this whole thing over again."

In fact, they already have. A sympathetic mole at the Children, Youth and Families Department called the family recently to say that her office had received a call that Ana had been seen out with her parents eating ice cream.

"It was frozen yogurt," Martinez-Regino says, "and it was on her diet."



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