Home >  Local News

She disagrees with doctor, ex-husband about treatment for chronically ill boy

Sunday, December 29, 2002

By Steve Levin, Post-Gazette Staff Writer

Almost immediately after their son was born in 1989, Debbie Luttig and her common-law husband split up.

During the next 12 years, their sporadic custody disputes filled a thick file in the Family Division at Allegheny County Common Pleas Court.

	Debbie Luttig -- "Because I didn't do exactly what the doctor said, they moved me out of the way." (Pam Panchak, Post-Gazette)

But despite the accusations and counter-accusations, one thing was clear: The boy was primarily Luttig's responsibility. She housed him, got him to school, fed him and dealt with his medical problems. His father had regular visits with him, but was never the primary parent.

Just about a year ago, all of that changed.

On Nov. 27, 2001, the boy, who was then 12 and in his seventh year of struggling with Crohn's disease, a debilitating and incurable bowel disorder, was taken to Children's Hospital by his father, Daniel. The father is not being fully identified to protect his son's privacy.

It was a fateful visit, starting a chain of events that within five weeks would result in Luttig losing custody of her son after a Children's Hospital doctor and the Allegheny County Office of Children, Youth and Families accused her of providing inadequate and improper medical care for the boy.

A specialist at Children's wrote that Luttig had put "unreasonable restrictions" on her son's care, and as a result the boy was at risk of dying and required "active medical intervention." A CYF caseworker went even further, claiming the boy was "severely ill and in the throes of dying."

How close to death is debatable. Yet it was enough for a judge to take custody of the boy away from Luttig and give it to the boy's father. Now, almost a year later, her only contact with her son is through weekly, two-hour supervised visits.

The case raises several serious questions. Was it neglect or just a bitter custody struggle that caused Luttig to lose her son? Did her care for her son endanger the boy's health, or was she simply guilty of aggressively questioning the recommended treatment? And was the rare use of medical care as a reason for taking the boy away from his mother really warranted, or were they victims of overzealous officials?

A lifelong struggle

Debbie Luttig's life as a single mother has been molded by the medical needs of her son's disease. Crohn's and ulcerative colitis, known collectively as inflammatory bowel disease, affect about 1 million Americans.

People with these diseases usually suffer from diarrhea, abdominal pain, fever, joint pain and, at times, rectal bleeding.

In her son's case, as with other young people suffering from Crohn's, a lack of appetite resulted in weight loss and below-average growth. Unable to control his bowels, the boy could defecate from a sneeze or a laugh.

From fall 1999 through the spring of 2001, he was homebound and taught by Pittsburgh school district teachers.

Luttig, 44, of the Allentown neighborhood of Pittsburgh, has worked various part-time jobs since her son's birth.

She handled the doctors and the medications on her own, and Daniel, her former husband, followed her lead.

But Luttig's and Daniel's relationship through these years was rocky. In 1995, she called CYF after finding bruises on her son's arm.

Daniel, in turn, called Pittsburgh police three times about Luttig, complaining about "a problem with the child." Police investigated and found nothing.

Daniel, 46, who works full time as a truck driver, also refused to provide a court-ordered medical insurance card from 1991 to 1997 for his son, which would have paid for doctors' appointments and prescription medicines. It wasn't provided until Luttig went back into court

In January 2000, Daniel, who declined to be interviewed for this story, filed for joint custody. His request was denied.

Throughout 2001, Luttig ferried her son to local hospitals and as far as Philadelphia for treatment. He was treated with two primary medications -- the immunosuppressant 6-MP and a biological therapy called Remicade -- which provided limited relief from the disease.

Both medications have been approved for adults by the Food and Drug Administration, but not for children. There are no FDA-approved medications for children suffering from Crohn's disease; instead, doctors use adult-approved medications and make educated guesses about the right doses.

Luttig said she didn't know until November 2001 that the drugs her son had been prescribed had not been tested on children. It frightened her when she found out, and she decided she needed to become more vigilant about questioning doctors' prescriptions for her son.

Worsening condition

That same month, she started her son on a regimen of probiotics, strains of "friendly bacteria" that can fight the growth of harmful bacteria in the intestine, plus an iron supplement and a multivitamin with iron. Some Crohn's disease sufferers have found probiotics helpful, but research studies have been inconclusive. The boy also continued taking 6-MP and an anti-inflammatory drug known as Pentasa.

Despite the drugs and other medications, the boy's condition gradually worsened through the summer and fall of last year, as sometimes happens with Crohn's sufferers.

Luttig said she and Daniel had agreed that if the drugs, probiotics and supplements did not bring about any improvement in their son, they would travel to Cleveland in January to see a specialist.

Then came the Nov. 27 turning point.

On that day, Daniel told Luttig he was taking their son to a urologist for treatment of a swollen scrotum. Swollen joints and extremities are common among Crohn's disease sufferers.

Instead, he took the boy to Children's Hospital, where he was seen by Dr. David J. Keljo, a pediatric gastroenterologist. Children's officials then called Luttig, asking her permission to carry out various procedures on her son.

Instead of giving her consent, Luttig immediately drove to Children's and had her son discharged.

She said her reaction was partly due to the fact that she had been dissatisfied with Children's when her son was treated there in 1997 and 1998.

Keljo, who said he could not talk about the case because Daniel had not given him permission to discuss it, called Luttig late that afternoon.

According to Luttig, the doctor said her son's blood showed he was slightly anemic. His protein level also was low, and Keljo wanted to give him an infusion of albumin, a complex protein in human blood. Keljo asked her to bring the boy in.

"I had no problem with that," Luttig said. "If my son needed [albumin], by all means. I didn't care where he got it."

Luttig gave her word that she'd take her son to Children's on Dec. 4, but said she wouldn't approve the albumin procedure until the hospital provided her with an "insert" on the substance -- pages of densely typed information similar to what pharmaceutical companies include with their prescription drugs.

CYF enters picture

When Luttig and her son arrived at the hospital Dec. 4, she said she found that instead of the albumin infusion, her son had been scheduled for an "oral contrast," which would require him to drink a large amount of a liquid pharmaceutical dye so doctors could scan his intestinal tract.

Normally, Luttig said, such procedures are scheduled in the mornings because patients are supposed to fast after midnight. She said a nurse told her, "Your doctor's office gave you the wrong appointment time." Luttig and her son then left.

Three days later, Luttig received notice that Daniel had filed for an emergency change of medical custody.

At the Dec. 12 hearing, Daniel's attorney charged that Luttig was endangering the boy's life by refusing to provide adequate medical care.

According to the motion presented by the attorney, Bethany Neiderhiser, Luttig had "discontinued all [of the] child's medications in favor of holistic medications and treatment." Luttig said that was untrue.

Although Keljo, the Children's doctor, did not testify, Neiderhiser's motion stated that Keljo "doubts that [Luttig] will comply with his recommended course of treatment, that she will refuse to administer child's medications and that [the] child is in significant risk of harm."

Common Pleas Family Division Judge Kathleen R. Mulligan ruled that CYF should begin an investigation.

Two days later, Luttig received a letter from Keljo addressed to her and Daniel.

"I am extremely concerned that [the boy] is chronically malnourished and chronically ill, that he has an abdominal mass, that he has a blood count which suggests significant inflammation, that he is anemic, and that his phosphorous and albumin are low," the letter read. "These are signs of serious illness.

"I am concerned that Mrs. Luttig's attempt to shield [her son] from adversity has placed unreasonable restrictions on his medical care."

Battle lines are drawn

Luttig wrote an eight-page letter in response, chastising Keljo for not providing her the written information about the albumin infusion. She wrote that he was part of the reason that "the anxiety level suffered by [the boy] has now increased substantially."

On Dec. 21, two days after a CYF caseworker visited her home, the agency called Luttig and ordered her to take her son to any local emergency room. She chose UPMC-Presbyterian.

There, he was seen by Dr. Charissa Pacella. Her written report said that while there was "obvious evidence of issues related to [the boy's] chronic illness, he does not appear to be acutely dehydrated, [have low blood sugar] or otherwise [be] in need or urgent hospitalization."

Her advice was that the boy be discharged to his mother's care with follow-ups.

Keljo, the Children's specialist, then wrote Luttig another letter on Dec. 26.

"I am concerned that [your son] is at risk of dying from complications of his Crohn's disease if he continues without medical evaluation and treatment. You may choose the hospital that you wish to treat [the boy], but it is my opinion that he needs to be hospitalized for further evaluation and immediate treatment."

Those are alarming words, but Luttig said she didn't get that letter until New Year's Eve. In the meantime, she let her son spend most of the holidays with his father, who did not take the boy to see any doctors during that period.

On New Year's Eve day, Luttig had her son back with her again.

CYF caseworker Huey Kight-linger called Luttig twice that afternoon, leaving messages for her to call back. But Luttig didn't return from her errands until after 5 p.m. At 6:50 p.m., Kightlinger, two Pittsburgh police officers and emergency medical personnel arrived at Luttig's home. She was served with an Emergency Custody Authorization from CYF.

It meant that CYF was effectively taking control of her son for as long as the next 72 hours, after which there would be a hearing to determine his future.

A rare intervention

Through October, CYF had authorized 887 Emergency Custody Authorizations to take children from their parents or caretakers in Allegheny County this year -- nearly 90 a month. Most of those cases involved allegations of the child being beaten or dangerously unsupervised. Very few of them, however, involved a dispute with doctors over the medical care that a parent is providing a child.

Although the opinion of Keljo, the Children's specialist, was cited by Daniel's attorneys when they sought custody of the boy, the hospital itself did not intervene in the case.

Dr. Mary Clyde Pierce, division chief of the child advocacy center in the pediatrics department at Children's, said that out of 50,000 patient visits each year, only one might result in the hospital seeking emergency custody, and when it does, "it has to be so significant that we think that child is going to die."

Some experts feel that the inexact nature of medical diagnosis should make child welfare officials cautious in how much weight they give to doctors' conclusions before removing a child from a custodial parent.

Allegheny County Coroner Dr. Cyril H. Wecht, for instance, said that "in most of these instances, Dr. A says do this and Dr. B says do that. Medicine is not an absolute science. No doctor has the omniscience to make the decision that is the absolute sine qua non about a condition."

After the group of officials showed up at Luttig's door, they took her son to Children's, and she went along.

She demanded to see a hospital social worker, and when she did, she asked for a copy of the hospital's Patient Bill of Rights.

Under parents' rights on behalf of the patient, Luttig read No. 5 over and over again: "You have the right to refuse any drug, treatment or procedure to the extent permitted by law and be informed of the consequences of your refusal by the physician."

She spent the night in her son's room.

Throughout Jan. 1, she tried to contact the agency that represents parents in CYF hearings, hoping to find an advocate for the hearing the next day that would determine whether she retained custody of her son. But the phone number CYF's Kightlinger had given her was not the agency's emergency number; a recording told her to call back after the holiday.

Luttig was unable to find an attorney. And Keljo did not visit her son.

She did finally get the printed information about the albumin infusion. That evening, her son had the procedure.

On Jan. 2, Luttig met her advocate, Jim Robertson, about 15 minutes before the shelter hearing began.

At such shelter hearings, attorneys and child welfare professionals try to show that changing custody is imperative to protect a child's health, and hearsay evidence is admissible.

During the course of the 35-minute hearing, without using witnesses or documented evidence, Daniel's attorney, Lisa Marie Vari, said Luttig had a "chronic drug and alcohol addiction," refused to give her son any medication and was unemployed, according to transcripts of the proceeding.

Vari described the boy as looking "like a child that is from a malnourished country with a swollen stomach and puckered-in cheeks and everything else."

Luttig said in an interview that all of Vari's accusations were untrue. She said she never had a drug or alcohol addiction, had continued to give her son his medicines and worked part time on and off.

But at the hearing itself, she did not help herself.

Groggy from lack of sleep during the previous 72 hours at the hospital, she told Judge Robert J. Colville that a hospital doctor had recommended that the boy be discharged.

But when Colville asked her which doctor, instead of talking about her UPMC-Presbyterian visit of Dec. 21, Luttig gave a rambling answer about Keljo, the Children's specialist.

Neither could she recall the name of the doctor who performed the albumin infusion Dec. 31.

While he expressed doubts about the wisdom of changing the boy's custody, Colville nevertheless ruled that Daniel should have primary custody and responsibility for his son's medical decisions. Luttig was granted a single weekly overnight visit with her son.

That afternoon, Luttig took her son to a previously scheduled psychiatric appointment, violating the judge's decision.

Within a week, visitations with her son were mandated to be supervised.

A painful year

The 11 months that have followed have been hard for Luttig.

She hired an attorney in mid-January, but after three months, Luttig's lack of money and disagreements about strategy ended their working relationship.

On Feb. 12, Luttig received a call from Daniel at 4:30 p.m.

He told her that if she came to Children's Hospital in the next 30 minutes, she could see her son.

She asked to speak to the boy.

"I'm going to be OK," her son told her.

"What's going on?" she asked.

"I'm not sure."

Daniel got on the phone and told Luttig that doctors were going to remove the boy's colon the next day.

The surgery, which is not uncommon in younger Crohn's patients, lasted at least 10 hours, although Luttig is not sure of that because no one, including Daniel, has ever provided her with details of the operation.

Not until late that night did she find out that the surgery had been successful.

In April, Daniel, who was still working full time, went back to court and asked for child support from Luttig.

Luttig was ordered to pay him $200 a month. The hearing officer, relying on the uncorroborated statements from the previous hearing, made the payments retroactive to January because of Luttig's "neglect toward the child, who almost died."

Physically, at least, the change in custody has been good for the boy. He is back in school, has gained weight and has grown taller.

A psychiatric evaluation showed the boy would benefit from counseling because of the separation from his mother, but the 13-year-old currently is not receiving such help.

Luttig has filed a motion to regain primary custody of her son, but is representing herself because, she says, she doesn't have enough money for an attorney. A hearing is scheduled for February.

She has asked the city of Pittsburgh's Human Relations Commission to investigate her case.

She's seeking reimbursement from Children's Hospital for expenses and is asking that the hospital tell parents when drugs have not received FDA approval for pediatric use.

She still sees her son only once a week. Because she must pay $50 to cover the cost of each supervised visit, she said, she has not been able to afford to see him more frequently.

Her sense of injustice has only grown over time.

"It is simply my belief that I asked too many questions," Luttig said. "No one should lose their kid because they ask too many questions.

"Because I didn't do exactly what the doctor said, they moved me out of the way."