HAMBURG, N.Y. (WKBW) — A Hamburg couple says they are desperately waiting for the approval of brain surgery for their baby boy, but right now, they feel caught up in a battle with their health insurance provider.
The couple says they want to get the best possible care from a highly experienced surgeon in Pittsburgh, but their health provider cannot cover "out-of-network".
7 News Senior Reporter Eileen Buckley met with the family of baby Cam to learn about his story.
WATCH: 'We would do anything': Heartbroken parents fight insurance denial for baby's brain surgery
As Alyssa and Brad Casacci of Hamburg happily play with their 11-month-old son, Cameron, whom they call Cam for short.
Cam seems like a healthy baby boy, but as he approaches his first birthday next month, he's falling behind.
Hours after he was born, he suffered a stroke on the left side of his brain and then things progressed to seizures and epilepsy.
“Our worst fears that he was having infantile spasms, which, if you're not familiar, is a really serious kind of beast of its own form of epilepsy,” remarked Alyssa Casacci, mother. “You can't use typical seizure medications for them. They have their own kind of specific course of treatment, and we've exhausted all of them at this point."
In the last few months, Cameron was hospitalized several times, and that's when the couple found out about the drastic brain surgery that disconnects the left side of the brain from the right in hopes of stopping the seizures.
"The sooner we do it, the better chance his brain has to rewire as much as possible,” described Brad Casacci, father. The baby's parents found a surgeon with the most experience in Pittsburgh and were ready for surgery last month, but it was shut down.
Cameron’s insurance is a Medicaid Managed care plan through Independent Health, and the surgery was denied. I contacted Independent Health and received a statement saying, in part, it was “out of network."
"Federal law (HIPAA), New York State law, and our internal confidentiality policy prohibit us from disclosing any details concerning a member's protected health information," the statement continued.
As a Medicaid managed care plan, we are bound by federal and state compliance laws to follow coverage decisions. New York State's Medicaid plans do not include out-of-area coverage, unless the service cannot be provided in-network. When such denials occur, independent health has identified in-network provider(s) and/or facilities(s) with the ability to provide the particular service."
Independent Health provides comprehensive, quality benefits and services. Medicaid members have appeal rights and can also request a fair hearing if they disagree with the coverage decision."
We always clearly let members know of their appeal rights. After the member has followed the appeal processes, coverage decisions by external entities are binding."
Independent Health
"It's unfathomable that you can look at him as a dollar sign instead of a person,” Cameron’s dad reflected.
The couple did appeal, and it was denied.
In the denial, Independent Health notified the couple of a surgeon in Rochester, but they don't want someone with less experience to perform this important surgery. "I scheduled with that provider, and the earliest they can see us is the middle of September for a consult,” Cameron’s mom noted.
Both Brad and Alyssa reflected on the situation.
“We're not trying to treat a broken arm. It's the brain. You have one chance,” Cameron’s dad remarked. “Our son's life and brain are not a game."
“We're not trying to be dramatic, but we say, we say, the person who performs the surgery on our child really, kind of is laying down the framework for the rest of his life,” his mother commented.
For now, the couple is heartbroken, trying to get their son the best treatment possible.
“Not to be able to receive the care he needs because of the bureaucracy that we are facing, in this broken system, is just. It's been the most heartbreaking,” Cameron’s dad said.
"We would move mountains for this child. We would do anything,” Cameron’s mom teared up.
A GoFundMe page has been established for those willing to contribute.
