WADING RIVER, N.Y. (WCBS 880) — A Long Island family is praying for a miracle after learning that their baby boy is now suffering from the same medical condition that required their daughter to undergo a lifesaving heart transplant two years ago.
The community is now rallying behind the family and helping to raise funds after Brian Cotter of Wading River shared the devastating news last Tuesday that his 11-month-old son, Everett, who the family calls "Buddy", has cardiomyopathy and will also need a heart transplant.
Buddy's older sister, Ruby June, also suffered from an enlarged heart and underwent transplant surgery on Dec. 22, 2019.
"Never in a million years did we think our happy healthy boy would be where his sister was almost two years ago. He has an enlarged heart (cardiomyopathy), same as Ruby had," Cotter wrote in a Facebook post.
A day after being admitted to the hospital, Buddy lost his pulse for several minutes and was put on an extracorporeal membrane oxygenation life support machine.
"We are broken. We did all of the tests, the scans, the checks with nothing to show. He was thriving, happy, strong. But here we are again. There are no words to describe this feeling, our sweet boy," Cotter wrote. "Please pray for our Buddy, this can't be the end of his story."
Buddy, who will celebrate his first birthday on Dec. 30, is now using a ventricular assist device called Jarvik, which was implanted on Friday, to help keep him stable as he waits for a heart transplant.
The device is different from the Berlin heart his older sister had.
While the Jarvik is in clinical trials and has only been tested in seven pediatric patients, his parents opted for the device because it has been shown to have a lower stroke rate in adults compared to the Berlin heart, Cotter explained.
"This is scary and uncharted territory for us since Ruby had so much success with the Berlin. But given the potential that it has to provide Buddy with a better quality of life and less stroke risk while he waits, along with the fact of taking into consideration of our experience with the Berlin Heart and that we could be contributing to significant advancements in the field on bridging patients to transplant, we felt this was the best choice for our family," Cotter wrote.
Kristen Ruetter, who works with the New York Blood Center, told WCBS 880's Sophia Hall that the family's situation is unusual.
"We have never seen anything like this that I know of," said Ruetter. "The parents, after Ruby, they were hesitant about is this genetic. They did testing and everything, and everything came back fine so they had another baby and we are all in shock. It's very rare."
A GoFundMe page has been set up to help the family and community members have also come together to buy gift cards and Christmas presents for Ruby June.
A blood donation event has also been set up for Dec. 22.
"We are also at the same time trying to raise awareness of the critical need for blood," Ruetter said. "Ruby also needed transfusions during her time. It's very important, we are in an emergency blood shortage at this point."
