Fourteen-month-old Claire DeCant is a beautiful, happy baby despite the swelling hemangioma under her left eye. "It first started as a little scratch under her eye when she was 4 and a half weeks," says her mother Davina.
Doctors don't know what causes hemangiomas to form, but the vascular tumor - an abnormal build up of blood vessels - is common in premature Caucasian female babies. "She was born 6 weeks premature."
As Claire grows, so does the hemangioma. First-time parents, Ryan and Davina DeCant say they've asked doctors to remove the benign tumor, but their insurance provider, Kaiser Permanente told them they won't cover because it could make the situation worse. "They didn't want to leave a scar on her face. My husband and I said we don't care about that. We want her depth perception to be normal, we want her vision to be at full capacity."
Frustrated, the family contacted Gregory Levitin, a doctor based in New York City. "Well as a specialty interest there are several doctors who can treat simple legions. For the more complicated legions there's probably less than a dozen specialists like myself who treat this across the country."
The Decant's sent Dr. Levitin photos. "In this location specifically it can encroach into the orbit and cause compression of the eyes called astigmatism and this is where the eye cannot develop normal vision. Along the nose it actually collapses the nose. No different than if you or I put pressure on our nose. It blocks off the nasal airway."
On a trip he makes monthly to Los Angeles to meet with patients with conditions such as this, Dr. Levitin evaluated Claire, then sent this letter to Kaiser, describing her "significant and progressive vascular malformation of the left hemiface" and said the tumor "require(s) a surgical excision as it was "likely to potentially grow further."
"With Claire's situation this absolutely should be covered by insurance. Anyone who looks at a smiling picture of this child can tell there's a tumor in her face. This is not a cosmetic issue at all."
A month later, Kaiser responded to the Decant's request for an "out of plan referral." It was denied. The reason listed: "insufficient clinical information."
We had a load of specialists that did review the location and the effect on breathing and vision. Pediatric cardiology, pediatric optomology, plastic surgery, dermatology and pediatrics. The assessment was it was not affecting the vision and it was not affecting the breathing," says Dr. Michael Jorgensen, assistant medical director, LA medical center.
But the Decant's say Claire has had trouble breathing, walking and seeing properly because of the hemangioma. "These are all things we notice. We expressed concern with Kaiser and they just did not care," says DeCant.
Kaiser says the tumor may be removed surgically eventually if necessary. But their team of specialists thought it best to first treat the tumor medically by prescribing propranolol, a high blood pressure medicine typically given to adults, then reevaluate before possibly offering surgery down the road.
But the DeCants say as they watch their baby suffer, waiting is not an option. The DeCants have filed two complaints and four appeals against Kaiser, all unsuccessful. The family plans to switch from Kaiser, an HMO, to Blue Shield, a PPO in October so Claire can have her hemangioma removed by Dr. Levitin who says he will do the surgery.
