Investigation: Insurance companies denying cranial helmets for infants with flat head syndrome

FOX 46 is getting results after an insurance company denied a claim for a cranial helmet for an infant - a device deemed medically necessary - to correct a skull deformity known as flat head syndrome.

"My initial thought was what are we paying for?," said Heather Brooks. "We pay $700 a month for insurance. We chose this package to make sure our son was taken care of should anything at all happen to him."

When Brooks' now seven-month-old son Arcturus was born his mom didn't notice anything wrong.

"I thought he was the perfect baby boy," she said. 

Doctors diagnosed Arcturus with a common skull deformity called plagiocephaly. The condition creates the appearance of a misshapen head and can cause some long term problems if not corrected.

One common treatment is through the use of FDA approved cranial helmets.

"We have this new life e want to make sure should he need anything at all that we can take care of that," said Brooks. "That's our obligation as parents."

But Brooks said her husband's insurance company, United Healthcare, did not meet its obligation when it rejected her claim. The new mom, who just lost her job, was told she would have to pay $4000 out of pocket for the medical device.  

A FOX 46 investigation found it is not uncommon for insurance companies to deny these claims. In 2008, Blue Cross Blue Shield settled a class action lawsuit after they were accused of refusing to pay for "hundreds" of helmets. 

Blue Cross Blue Shield did not respond to a request for comment.

"I've personally seen patients with dramatic improvement with the helmets," said Dr. David Bauer, an attending pediatric neurosurgeon at the Children's Hospital at Dartmouth-Hitchcock Medical Center in New Hampshire. "And I do prescribe them myself."

If left untreated, it could lead to a "longstanding skull deformity" which could make it difficult to wear sports helmets or glasses. 

Lisa Hendricks, a physical therapist at Cranial Technologies, says it could lead to ear canal drainage, cross bites, sinus drainage, depth perception problems and could require orthodontic work. 

There is no long term research that offers concrete evidence as to what problems these infants would suffer from later in life. 

Dr. Bauer wrote the guidelines for plagiocephaly treatment for the Congress of Neurological Surgeons, an organization that represents thousands of medical professionals. He thinks insurance companies should cover the cost when the condition is moderate to severe.

"Most definitely," said Dr. Bauer. "For moderate to severe plagiocephaly it's been shown to be helpful to more quickly correct the deformity."

For minor plagiocephaly conditions a  helmet is not as effective as physical therapy or adjusting the baby's sleeping pattern, Dr. Bauer said. 

He says the expensive cost of the device, and the gray area over what constitutes "moderate to severe" can play a factor in blanket insurance denials.

United Healthcare says they "do offer plans that include coverage of cranial bands," which are also known as cranial helmets. However, a spokesperson repeatedly ignored questions about how someone can go about adding that coverage or how long before pregnancy or birth it must be purchased.  

"We pay for all services that are covered benefits," said United Healthcare spokesperson Maria Gordon Shydlo, when asked about Brooks' insurance denial. "But cranial bands are expressly not included in this members' plan. We encourage anyone who has questions about their coverage to call us directly so we may help them better understand their benefits."

Brooks says she feels stuck. 

"The insurance company told us cranial was an addition to our plan that we should have added prior to his birth," said Brooks. "They expected us to predict this was going to happen and already add cranial to our insurance plan prior to his birth."

Even if she wanted to, Brooks said there was no plan offered by her husband's employer, that offered that coverage. 

"I'm devastated," said Brooks. "I'm frustrated."

FOX 46 started making phone calls and we are getting results for Brooks and Arcturus. Cranial Technologies of Charlotte offered to donate the $4000 cranial helmet for free. 

"Unfortunately we have some insurances that pose a problem but with families we want to do what's best for them," said Lisa Hendricks, a physical therapist with Cranial Technologies. "It's always a case by case basis. And the company felt, as a whole, this was a case that we needed to address for this family."

For Brooks, it's a chance for her son to live a normal life.

"I don't know what to say to that. That's amazing," she said, breaking down crying when told the news. "Matt, you are amazing. Your reporting just saved my son a lot of potential pain in his life so thank you."

RELATED: Family says donated medical helmet already helping infant son after insurance denial

The North Carolina Department of Insurance has not received any complaints about cranial band denials in the past two years but officials recall one case, within the past five years, where twins were denied a cranial helmet.

"It was not a covered benefit with the insurer so the external review request was denied," a NCDOI official said.

NCDOI developed Smart NC to help people file insurance appeals and better understand their options and rights when it comes to health insurance. You can reach them at (855) 408-1212