New York parents fight insurance denial for baby's life-saving brain surgery

HAMBURG, N.Y. (WIVB) — A Western New York couple are beside themselves after their 10-month-old child's life-saving brain surgery was denied by their insurance company. Now, they're pleading for help as they hold out hope the decision will be reversed.

Born in September 2024, Cameron Casaacci is the child that Alyssa and Brad Casacci always wanted. But within hours of Cam's birth, their world was turned upside down.

"They did an MRI on this 1-day-old baby and kind of confirmed the worst: He had a very large stroke on the left side of his brain. [Additional] seizure activity was secondary to that injury," Alyssa said.

The family was then transferred to Oishei Children's Hospital in Buffalo, where they spent the next 19 days holding out hope for a miracle to save their baby boy.

"It's a really hard pill to swallow when you realize you have the sickest kid in the NICU," Alyssa said. "Cam is the most resilient, the hardest, toughest little kid you will ever meet. We only spent 19 days there. We thought we would be there a lot longer."

Cam kept on fighting as the 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.

"[The Oishei neurosurgeon] recommended a very drastic surgery," Alyssa said. "A hemispherectomy, where basically, they go in and they disconnect the left hemisphere of his brain from the right [in order to stop the seizures]."

The family sought treatment with a recommended neurosurgeon in Pittsburgh and a date was set for the surgery. As they prepared for the procedure, however, their hopes and prayers came crashing to a halt.

The insurance company, Independent Health through New York State Medicaid, denied the surgery because it was out of network.

"They were saying, 'We have people here who do the surgery,'" said Alyssa. "[However], we were told from the beginning there's no one in Western New York who has the skill and expertise to do this specific surgery."

Now, well over a month since Cam was set to have the surgery, the heartbroken family is hoping the insurance company will reverse their decision.

"Do the right thing," Brad Casacci said. "Look at it as a human, as a child, and not as a dollar sign."

Nexstar's WIVB reached out to Independent Health. While the company said it is prohibited by law from discussing details of a member's health information, it gave the following statement, in part:

“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

The company added it "always clearly" informs its members that they have appeal rights and can request a fair hearing if they disagree with a coverage decision. Independent Health also said after an appeal process is begun, decisions will be made by external entities and that those decisions are "binding."

While Cam's parents are still devastated by the coverage denial, they say they won't give up fighting for their son. A GoFundMe for the Casacci Family was created by by Alyssa's best friend, Taryn Nichols. The fund has so far raised just over $39,000 of its $100,000 goal.

On her GoFundMe page, Nichols explains that due to the complications of caring for Cam, Alyssa Casacci had to leave her job as a pediatric occupational therapist. The family is now operating under one income as they hope to get a break soon.

Brian told WIVB that the "very, very hard" situation often feels dark and isolating. He said that some days it feels like he doesn't know how he's going to the next day but that there's one reason he'll continue to do it."

"... We're doing it for Cam."