Hamburg couple relieved as baby gets life-saving brain surgery after insurance company reverses denial

HAMBURG, N.Y. (WIVB) — An 11-month-old from Hamburg who was denied a life-saving brain surgery by his family's insurance company had the surgery this week and is doing well.

This comes after the insurance company reversed the denial, and now, with the surgery finally in the rearview mirror, the parents remain hopeful that the worst is finally behind their family.

After months of fighting to get their baby the surgery, the parents of 11-month-old Cam Casacci can now breathe a sigh of relief. The seven-and-a-half-hour-long procedure went off without a hitch.

Known as a hemispherectomy, it's the most complex and invasive of all surgeries to treat severe epilepsy.

Born in September 2024 to Alyssa and Brad Casacci, Cam was the child they'd always wanted. However, within hours of Cam’s birth, their world would be turned upside down. Doctors informed them that he had suffered a very large stroke on the left side of his brain, resulting in seizures.

“They did an MRI on this 1-day-old baby and kind of confirmed the worst — that he had a very large stroke on the left side of his brain and the seizure activity was secondary to that injury to his brain,” Alyssa said.

The next few months would be an uphill battle. Cam kept on fighting as his family did what they could to deal with his condition.

Through all the needles and medications, they remained hopeful that a solution would be found to save their son. They found it in the form of a specialized surgeon in Pennsylvania.

The doctor, a neurosurgeon at UPMC Children's Hospital in Pittsburgh, came highly recommended and agreed to do the surgery, but the insurance company, Independent Health through New York State Medicaid, denied the surgery because it was out of network. They would later reverse that decision after the Casaccis advocated for their son.

In a statement at the time, Independent Health said this was an important case and that “they’ve been actively communicating with the State Department of Health,” adding, “Medicaid members receive services from in-network providers; however, given the rare nature of the procedure requested, the department has granted us flexibility to approve the procedure at the facility requested without further appeal or delay.”

Cam underwent the surgery on Wednesday and is now doing great.

"We're hoping this is the first step into a long seizure-free life," Brad said. "Seven and a half hours is a long time and it's our little baby, and you're nervous and we picked out this doctor — this is the one we trusted to put his brain in this doctor's hands."

Now that the surgery is over, Cam still has a long way to go with recovery, but the Casaccis remain hopeful that this was the first step to a seizure-free life for their baby boy.

"We'll pick back up with our neurologist and they'll keep monitoring everything that has to do with his brain and hopefully we get good results as time goes on," Brad said. "We'll see how it goes, but things are going in the right direction."

As patients all across the country, including pediatric ones just like Cam, are denied important, potentially life-saving procedures, the Casaccis hope their story inspires others to fight for coverage, especially when it's for one's child.

"There's many, many others out there who are fighting for health care coverage and what they need to successfully live their life," Brad said. "We'd like to pay it forward and help out other people who are in a similar journey, whether they're a child or themselves, so I'd like to think that, if this brings light and helps someone out, great."

After news broke of their fight for coverage, countless people stepped up to help and donated to their GoFundMe account which is just shy $2,000 of their $100,000 goal.