HAMBURG, N.Y. (WIVB) — 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 told Nexstar’s WIVB.
The family was then transferred to Oishei Children’s Hospital in Buffalo, New York, 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. After boughts of needles and medications, Cam continued to fight. Then a neurosurgeon “recommended a very drastic surgery.”
“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],” Cam’s mother explained.
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 and said there were doctors in the area that could perform the surgery. The family, however, was told nobody in Western New York was qualified.
“We talked to insurance. They say, ‘Well, this is the game you have to play with the denials,'” Brad said. “His life and his brain are not a game.”
Alyssa and Brad have spent more than a month pushing back on the insurance.
“We appealed with the help of UPMC [University of Pittsburgh Medical Center] and their great staff, letters from our doctors here, our providers,” Alyssa explained. “They denied that, and then, as of last week, we just went forward trying to exhaust all avenues.”
Just days after WIVB’s initial report, the decision to deny coverage was reversed.
“A moment of relief that we got what we needed and we can move forward and give this little guy the best childhood and life that he deserves,” Brad Casacci told WIVB on Tuesday.
In a statement, 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.”
The surgery is now scheduled for next Wednesday, August 20, at UPMC Children’s Hospital with Dr. Taylor Able, a pediatric neurosurgeon who specializes in epilepsy surgery.
“We trust him, and he wanted to build that relationship with us,” Brad said. “But he showed that urgency, he knew Cam needed the surgery, just like we did, sooner rather than later.”
“We just can’t wait to move forward and just, you know, let his little brain do beautiful things,” Alyssa said.
As the Casaccis prepare for what doctors say will be a six-hour surgery, the family is asking for continued support and prayers as they move on to this next chapter.
