Katherine Regalado, 28, only saw the adorable baby smiles and a new older brother's doting attention to her baby Isaiah this summer. Yet, when Isaiah reached 4 months, her pediatrician noticed a problem she had missed.
Like many babies at birth, Isaiah's skull was misshapen. Only Isaiah's head never returned to a symmetrical shape. Doctors told Regalado, a stay at home mother of two living on Nellis Air Force Base, that the distortion had spread so much that it could soon leave Isaiah with a permanently asymmetrical head.
But Regalado was in for a bigger surprise. Her military insurance, TRICARE, wouldn't cover the orthotic helmet that experts promised would largely correct Isaiah's condition, called plagiocephaly.
"TRICARE paid for all the specialists leading up to the diagnosis until they ordered the treatment and then they [TRICARE] said no," said Regalado.
Regalado, whose husband is currently serving in Iraq, said she couldn't afford the $2,500 for Isaiah's helmet. Saving money over time wasn't an option either, since doctors told her children's skulls only stay malleable for the first year of life. After that, any misshapen bones would be permanent.
"They covered all the CT scans, the specialists," said Regalado. "I had no idea that they wouldn't be covering the helmet."
By the time Regalado heard that TRICARE did not cover the cranial molding helmet, she was lucky enough that a number of other military families had spoken out about the same predicament.
"I wasn't the first one to be denied," said Regalado. "I found other families online that were prescribed a helmet, and they said that they went to their military relief organizations, and so that's where I went to get a grant for my son."
Isaiah now wears his helmet, paid for by the Air Force Aid Society, for 23 hours a day, seven days a week. Isaiah's doctors prescribed the helmet for three months.
"He just got it last Friday," said Regalado. "We went for his first week checkup and we already saw significant improvement in the back of his skull."
Experts say babies with Isaiah's condition used to be rare before the American Academy of Pediatrics' 1994 "Back to Sleep Campaign." The public education campaign has urged parents to position babies on their backs when they sleep to reduce the risk of Sudden Infant Death Syndrome (SIDS).
The campaign was successful in cutting SIDS deaths, but the number of babies with flattened heads increased.
Now specialists say they see many more babies with flattened skulls from the back to sleep position and often, these cases are not so severe.
"People estimate about 10-15 percent of all kids have it," said Dr. Mark Proctor, of the department of neurosurgery at Children's Hospital Boston. The majority of his cases are from babies who develop flat areas on their skulls while sleeping.
"Through our hospital, we see 50 to 60 cases of plagiocephaly a week."
Regalado said her son's condition developed from birth, not afterward. "When I went to the specialist, she explained that his head, the way the shape was, that you could tell that this happened in utero," said Regalado.
Whatever the cause, TRICARE has refused to cover the helmets for two reasons.