A few years ago, many infants were misdiagnosed with a rare medical condition and subjected to unnecessary skull surgery.
The symptom was a misshapen, "flat" head. In many cases, the parents can alleviate the condition by simply repositioning the sleeping baby's head occasionally instead of allowing the baby to sleep in one unchanging position.
In more severe cases, a new device something like braces for the skull could be used over a period of months to gradually mold the baby's skull back into shape.
Instead of subjecting their son Jimmy to skull surgery as a neurosurgeon recommended, the Dodson family used this "DOC Band," and Jimmy's head began to take on a normal shape. That was three years ago, and today Jimmy looks fine.
Like neurosurgeons across the country, Dr. Anthony Wolfe at Miami's Children's Hospital says he's seeing more infants with misshapen heads. The treatment is simple, he says: "Most of them when they are recognized early don't need any other treatment than changing the position that the baby is sleeping in. But when we see a child who has a one-inch difference in the back of the head between one side and the other, then the patient is going to need a molding band."
Last year, the Food and Drug Administration approved the molding band for infants with skull deformities. The device, worn for about five months, costs about $3,000, and in most cases makes surgery unnecessary.
Susie Zaden, Amy Jourdet, and Melissa Downs were all referred to Dr. Wolfe by their pediatricians to have their children fitted with the molding device.
Zaden says of her son, "He was flat on the right side of his head, which made the front side of his head protrude forward."
Joudett's child had problems, too: "They had already noticed that his ears were no longer in the right place; the orbitals of his eyes - the sockets of his eyes - were out. This child could not wear glasses; he would not have been able to chew properly."
But all three women were told their insurance companies wouldn't reimburse them for the device. Says Zaden, "They said that it was cosmetic. That it was cosmetic reasons only and it was not medically necessary."
However, in some cases, a $50,000 surgical procedure would be reimbursed. Joudette recalls, "I was verbally told that surgery would be paid for, but not the DOC Band."
Susan Pisano is a spokesperson for the Amercan Association of Health Plans, which represents more than 1,000 health plans nationwide. "These decisions are always difficult," she says. "The purpose of this device is to treat a condition that is going to get better on its own. That's what the physicians are telling me in plans that choose not to cover it."
But Dr. Wolfe contends, "I can't think of a single instance where a doctor has unnecessarily prescribed a molding band. It's a deformity."
Dr. Wolfe says molding bands prevent more serious problems later on. "There is a simple treatment with a molding band that can alleviate this condition over a period of six months at essentially no risk to the child, and is number one medically indicated, and I think it is certainly not cosmetic."
Rather than wait for the insurance company to approve it, Susie Zaden and her husband went ahead and paid for the DOC Band themselves.
Susie Zaden explains: "If we had not paid out-of-pocket then my son would have never had the DOC Band in time and then he probably would have had to have the surgery. That would have been the only way to correct it."
The Zadens hired an attorney. The insurance company eventually reversed its decision, but the Zadens are waiting for the money.
Melissa Downs' insurance company finally agreed to pay too, but only after she collected research and doctor's statements, compiled it into a 40-page report, and presented it in front of an appeals committee made up of 12 department heads.
"It was a huge battle," she says. "I felt like giving up at times. The reason I couldn't give up was because I would have been out approximately $3,000, and after spending $6,000 a year on my health insurance, I could not afford it."
Amy Jourdet fought her insurance company with the help of her employer and got coverage as well. She and Melissa Downs are currently drafting legislation to get universal coverage for the molding device so that other parents won't have to go through the same ordeal.
Zaden speaks for all of them when she says, "You find out that something is wrong with your son and all these things can happen to him if you don't have the helmet, and on top of worrying about that you have to go through all of these hurdles with the insurance company after you have paid all of your premiums. It's just ridiculous."
Some insurance and managed care companies do pay for the molding bands. Those that don't have an appeals process. If you fight it, there's a good chance you can get reimbursed.
The incidence of SIDS has dropped dramatically since the recommendation came out to place babies to sleep on their backs. But many neurosurgeons across the country report a four- to six-fold increase in babies with misshapen and lopsided heads.
The best advice is to remember that infants have very soft skulls, and keep switching your baby's head position in the crib. When they're awake, give them plenty of tim on their tummies.
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