Maine woman ready to resist HIV treatment for her son > Loss of daughter leaves mother wary of drugs, DHS

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Just before Christmas 1996, Valerie Emerson posed for a portrait with her children. The photograph captures 5-year-old Zakary smirking, 8-month-old Jakob laughing, 2-year-old Nikolas lifting his chin in a half-grin.

Tia, weeks shy of 4, simply stares, unsmiling, into the camera. In her face is the image of the family’s hated member: AIDS.

Tia contracted the disease from her mother, who is infected with HIV, the virus that causes AIDS, but has no symptoms of AIDS herself. Nikolas is also HIV-positive. It is not clear whether he has AIDS. Neither Zakary nor Jacob is HIV-infected.

Tia died a few weeks after the Christmastime photo session. She was cremated five days before her birthday.

Nikolas, who will be 4 on Aug. 3, is still fighting. His doctors recommended he start taking a “triple cocktail” of drugs to possibly reduce the HIV virus in his blood to undetectable levels, thus prolonging his life, perhaps long enough for doctors to find a better treatment, even a cure.

Valerie Emerson said no. She endured too many cycles of hope and disappointment with Tia’s medical care, only to lose her daughter anyway. She has felt helpless too often with Nikolas, unable to completely soothe his discomfort, sometimes pain, left over from one drug or another.

Sitting in her attorney’s office last week, she said she is no longer willing to sacrifice quality for quantity when it comes to her son’s life.

Her stance could cost her Nikolas. As a result of her refusal to accept the recommended treatment for her son, the Department of Human Services has filed a petition in Maine District Court for a child protection order, saying Emerson has put the boy in “circumstances of jeopardy to his health and welfare.”

Epidemic’s Youngest Victims

Worldwide, it has been estimated that more than 1 million children are infected with HIV, according to a booklet about treatment options for HIV-infected children published in 1997 by the Baylor College of Medicine in Houston.

During childhood, a person’s immune and nervous systems are still growing, so HIV can do more harm more quickly than in adults. More than half a million HIV-infected children have already developed AIDS.

Some children infected with HIV in the womb or during birth may became very ill right away. Up to a third of HIV-infected children are seriously ill by their first birthday. Others seem healthy for years before symptoms develop.

Emerson, 26, learned she carried the HIV virus when she was tested during a routine prenatal screening while she was pregnant with her youngest son, Jakob. She was not prepared for the results, even less prepared to discover she had passed the virus on to two of her children.

She believes she was infected by an ex-boyfriend who never told her she was at risk. Fearing reprisals from him, she does not want the location of her home revealed.

Before Tia died, Emerson filled her with doctor-ordered antibiotics she said only seemed to make the girl worse. The same with AZT, until recently the standard drug for treating HIV-infected children. As far as Emerson could tell, nothing seemed to slow, or even ease, Tia’s deterioration. When she died, she was bedridden.

Emerson said Nikolas’ knees grew to twice their normal size when he spent 10 weeks on AZT. Nights were filled with her son’s screaming.

“There was nothing I could do,” she said. “Just hold him until he stopped.”

Now off the AZT, Nikolas, if small for his age, is “like a normal boy,” Emerson said. He eats a good breakfast, he gets into trouble, he wants to play past his bedtime.

Still, Nikolas is sick. According to documents provided by Emerson’s attorney, Hillary Billings of Bangor, Nikolas has already been hospitalized several times for pneumonia. His development has been delayed, perhaps because of his HIV infection.

Playing peek-a-boo with a reporter Monday morning in the family’s mobile home, Nikolas giggled and laughed from under a Barney blanket, but when the cover was pulled away, his face was pale, almost weary, above a gray Power Rangers sweat shirt.

In the space of an hour, he stopped his play three times and just lay on the floor, awake but listless. Emerson labeled his lethargy a side effect of an antibiotic he is taking.

Nikolas also had red bumps over his face and body that Emerson assumed to be chicken pox. Nikolas has already had chicken pox, but Emerson said it was a light case the first time and that the doctor had told her Nikolas might come down with it again. When Emerson’s mother arrived, she said she thought the bumps looked more like shingles. She told Emerson she should call Nikolas’ doctor.

“I’m going to call,” Emerson snapped, explaining that the family’s phone still had not been connected, even though they moved in last week.

“OK,” her mother said. “I just didn’t know if you’d thought of it.”

With that comment, Emerson’s mother, who has asked not to be identified, inadvertently echoed the doubts of the doctor who, according to the documents provided by Billings, filed the report with DHS that led to the agency’s petition.

Battle Over Care

In August 1997, Emerson’s family physician, Dr. Jean Benson of Bangor, recommended Nikolas see Dr. Jeff Milliken, a pediatric infectious disease specialist, also of Bangor. In his November 1997 report to Benson, Milliken described Nikolas as “a young man who suffers from AIDS” who has also weathered night sweats with fevers, a chronic cough, abdominal pain and other ailments, along with recurrent pneumonias.

Milliken recommended an “aggressive anti-retroviral therapy” of three drugs taken in combination: zidovudine (AZT), lamivudine (3TC) and nelfinavir. According to the booklet published by the Baylor College of Medicine, experts believe the more ways HIV is attacked by different drugs, the less likely it is the virus will become resistant to treatment.

Multiple drug treatments, also called HAART, for Highly Active Anti-Retroviral Therapy, have become the standard of care for HIV-infected adults. Many experts believe it should be the treatment of choice for children as well, although the relationship between the level of virus in the blood and its link to HIV disease is better understood in adults than in children.

Combination drug regimens, however, can be complex and daunting, requiring a patient to follow exact dosing schedules and take dozens of pills. The side effects can be severe. According to an article published last month in The Boston Globe, in adults anti-retroviral drugs can cause chronic diarrhea, headaches, nerve damage that leaves a pins-and-needles sensation in fingers and toes, even a redistribtuion of fat deposits to the abdomen, the breasts or the back of the neck.

According to Baylor’s booklet, the side effects in children can be similar. That’s what Emerson fears.

In a report to Benson, Milliken suggested that Emerson’s experience with Tia, combined with her own HIV status and her need to control Nikolas’ medical care, are working against Nikolas’ best interests.

He wrote that, while Emerson said she was giving Nikolas his AZT, he was “somewhat hesitant to accept this as she is clearly argumentative and believes that medicines will make him sick or sicker than he might otherwise be …”

Nikolas’ medical management “is too much under the direction of his mother,” continued Milliken. “She clearly is making decisions in a state of confusion and/or depression. She appears to be allowed the luxury of making decisions which lead inevitably to the [death] of the child as opposed to making decisions which may allow this boy greater longevity and a greater symptom-free survival during that period of longevity.”

Milliken suggested that Benson discuss with Emerson the “possibility of a voluntary release of parental rights,” without taking Nikolas away from his mother.

Doing so, Milliken wrote, would prevent Emerson from feeling responsible should Nikolas suffer complications from his treatment. She could simply live with him and support him emotionally as best she could. Milliken called the option Nikolas’ “best opportunity for symptom-free survival until the next generation of therapies for this disease becomes available.”

In his report, Milliken acknowledged that, as a pediatrician, he “predictably came down on the side of the child.” The petition of DHS to the court also appears to be an attempt to protect Nikolas, albeit by threatening Emerson’s rights as his mother to determine his treatment.

One pediatric AIDS expert, however, consulted by both Benson and DHS, said a court battle could do Nikolas more harm than good.

Second Opinon

Dr. Kenneth McIntosh of the Children’s Hospital AIDS Clinic in Boston saw Nikolas in March. In his written report, he said he considered Nikolas to be in the “moderate-prognosis group,” but did not clarify whether he has full-blown AIDS.

McIntosh described Emerson as “definitely rational,” but so “badly traumatized” by her experience with Tia that, to her, treatments are “bad.”

McIntosh agreed with Milliken that a triple drug therapy would be best for Nikolas, but he said it should be done only “if the mother buys into it.”

He believed it “likely [Emerson] can be worked with, although it will take patience,” and concluded that “any attempts to remove the child from her care would be very counterproductive.”

Attorney Billings hoped McIntosh’s findings would prompt DHS to drop its investigation, but the agency went ahead and filed its petition in May.

A Mother Waits

Maine Assistant Attorney General Geoffry Goodwin, who Billings said is handling the DHS petition, would not discuss the Emerson case or even acknowledge it, citing confidentiality requirements mandated by law.

Milliken and Benson are also legally prohibited from acknowledging Nikolas is their patient, much less discussing his treatment.

A hearing on Emerson’s case is scheduled Sept. 10. The outcome is unpredictable. As far as Billings knows, a parent’s right to withhold treatment from a child infected with HIV has never come before a court, in Maine or anywhere else.

Billings said the courts have generally ruled against parents who want to withhold antibiotic treatment for religious reasons, if the illness is acute and there is a known cure. At the same time, he said, the medical establishment does not generally report parents of a child with cancer, for instance, who want to stop chemotherapy and try a holistic treatment.

The Emerson case falls in the middle of that spectrum. Nikolas is not acutely ill. Triple drug theraphy is not a cure. But he will likely die from his disease.

DHS is seeking the right to manage Nikolas’ medical treatment, not to take him away from him mother, but the agency’s petition acknowledges that is a possibility if it is the only way to ensure Nikolas gets treatment.

Billings is afraid the treatment may be so demanding, and require such careful monitoring, that Nickolas will be unable to remain at home. Emerson, too, said that if Nikolas or her other children have difficulty coping, she would want to move Nikolas, perhaps to her mother’s home.

“At least,” she said, “I’d get to see him every day.”