Coping with your own child's illness

By Dennis Murray

A child's health problem—temporary or chronic—puts incredible strain on physician-parents. Here's how a few have learned to cope.

Medical families are just as likely to have a seriously ill child as "lay" parents are. Because of their training and connections, though, physicians are often in a better position to see that their sick child gets the best possible care. While that may be comforting, it doesn't lessen the logistical and emotional burdens, both of which can be crushing.

Pediatrician Mark A. Mozer of Blue Springs, Mo., knows this all too well. The prognosis for and care of his infant son, Jacob, diagnosed with a rare childhood cancer, was often the only thing on his mind. "At work," he says, "it was hard for me to deal with seemingly trivial issues, such as parents complaining about being up all night caring for a child's ear infection. I wanted to tell them how lucky they were."

Jacob's care certainly involved a lot more than losing sleep. Mozer and his wife, Cheryl, a pharmacist, had to mix and administer total parenteral nutrition, give shots and oral medications, and change central-line dressings. At one point, they bathed their son every six hours in Hibiclens to prevent skin burns from the chemotherapy. At bedtime, they took turns sleeping in Jacob's room to untangle his IV line if it kinked and to catch vomit caused by the chemo. "Sleep-deprived and barely surviving," Mozer recalls, "we wondered how on earth 'regular' parents learned to deal with all this."

Although Jacob's cancer has been in remission since May 1999, the Mozers are still constantly on guard. Jacob's neuroblastoma carries with it the risk of leukemia, and the chemotherapy treatments have damaged his hearing. As a result, he uses hearing aids and is receiving speech therapy. "We're not out of the woods yet," Mozer says, "but Jacob's prognosis is quite good."

Family physician Mike Christian and his wife, Katherine, understand what the Mozers have been through. Three years ago, Mike and Katherine, who is a nurse, became foster parents to a seriously ill preemie born to a cocaine addict at 29 weeks. The local foster care system and Child Protective Services felt that a family with no medical background would be overwhelmed taking care of an incredibly fragile infant like Michael, whom the Christians brought home after nearly three months in the neonatal ICU.

"He came with oxygen, an apnea monitor, and a monitor for oxygen saturation," recalls Christian, who practices in Moses Lake, Wash. "He needed to be fed every three hours, but it took an hour to feed him and it seemed like he spit up more than he ate. After the first day, Katherine and I looked at each other in dismay. We were 45 at the time, with two teenagers.

"For the first month," he continues, "Katherine left the house only for doctor's appointments. There were plenty of those, and they all required a two-hour drive each way, because of our distance from the tertiary care center. Some of those trips were pretty harrowing, because we'd been told that, with Michael, it wasn't a matter of whether we would have to perform CPR on him but when." (Thankfully, Michael has never needed CPR.)

At 8 months, a much healthier Michael had gained weight and was removed from all of his equipment. Soon thereafter, he was placed into the custody of relatives who abused him. "Two months after they took him," says Christian, "he was hospitalized with seizures, bruises over 90 percent of his body, and a fractured arm, a victim of the bureaucratic stupidity that permeates the foster care system."

Michael had lost ground—he was spitting up, losing weight, and wouldn't smile—but the Christians restored his health and decided to adopt him, after the state said it was going to attempt to find other relatives to place him with. "Now we have an 18-year-old, a 16-year-old, and a 3-year-old," Christian says. "You can't tell Michael from any other kid his age, except for one thing: It looks like he's being raised by his grandparents."

Relationships with caregivers can be strained

One of the trouble spots for the physician-parent of a sick child is interaction with the medical team. Colleagues and nurses, it seems, either ignore the doctor-parent's credentials or overvalue them—assuming that since she's a physician, she must know all there is to know about the child's condition and doesn't need the situation explained. Either way, the doctor-parent doesn't receive a full measure of compassion and caring.

Another problem for the physician-parent is frustration at what may seem like a lack of energy and attention to the child's problem. That's what family physician Elizabeth Pector ran up against when she was at a loss to explain her young son's extreme irritability and delayed development. "Like most parents, I expected Jared's doctors would catch problems, make a diagnosis, refer us for appropriate therapy, and closely monitor his progress," says Pector, who practices in Naperville, Ill.

"What I soon found is that I had to become his advocate, expressing my concern about his development, reading about possible diagnoses, talking with other parents, demanding evaluations with therapists." A definitive diagnosis remains elusive.

Mark Mozer, too, quickly became a tireless advocate for his son. He and Cheryl double-checked and often questioned the choice of drugs as well as treatment plans, often to the consternation of hospital staff and their son's doctors. "Maybe we tended to micromanage things a bit," Mark admits. "But I can honestly say that our son is alive today and doing well because of our medical backgrounds. For instance, I was able to immediately interpret Jacob's test results at each stage of his care, which helped us arrive at many decisions, major and minor. And both of us were able to understand and evaluate medical literature that would have overwhelmed a lay person."

Coping isn't a concept doctors are comfortable with

Although all parents of a sick or special-needs child must learn to cope with their child's condition, compounding the problem for physician-parents is the fact that doctors are trained to do something about illness; when they can't, they soon feel helpless. Anger and depression are often the consequence. Some physicians are quick to seek counseling. Others find comfort in talking to parents whose children have the same condition.

"I belong to an online support group of mothers of autistic children," says Brownsville, Tex., pediatrician Yvonne Sudarshan. "We compare notes, ask advice, share problems and triumphs. I also read voraciously about autism— initially to the point where my husband put a mystery novel in my hands and said, 'Read something else.'"

Mark and Cheryl Mozer also found the Internet invaluable. "Our local children's hospital treats only a few cases of neuroblastoma a year, which made us feel quite isolated," Mark says. "The Internet became a wonderful tool that allowed us to connect with other families going through the same ordeal." He especially recommends the Association of Cancer Online Resources (www.acor.org). Mozer even has a Web site of his own that allows families to share information and resources related to neuroblastoma (www.members.aol.com/nrainh20/jacob.html).

In addition to using online resources, physician-parents with seriously ill children should find good speech or physical therapists, suggests Elizabeth Pector. "Therapists," she says, "know much more than doctors about how to interact with sick kids, how to get them to accomplish milestones, how to encourage them, how to celebrate small victories. Even if there's no specific diagnosis, the therapy and constant work with a child is important." She recommends psychiatrist Stanley I. Greenspan's book, The Child With Special Needs: Encouraging Intellectual and Emotional Growth (Perseus Press, 1998), for guidance on practical interaction with even profoundly disabled children.

"Having a child with a special need or serious illness brings its own grief," Pector says. "Parents will always grieve for what they think they should have had—a mentally or physically normal child, a child who would survive until adulthood. We adjust to our child's disabilities, but we never totally accept them or stop thinking about what might have been."

MR. MURRAY is a senior editor at Medical Economics, in which this article was first published.

Dennis Murray. Coping with your own child's illness.

Contemporary Pediatrics

2003;3:109.