Wading River toddler undergoes lifesaving procedure to receive new heart, just as his sister did
On the morning of June 10, Ashley Cotter of Wading River was home with her daughter Ruby when she received a Facetime call from her husband, Brian.
Mr. Cotter was with their son Everett in New York City at NewYork-Presbyterian Morgan Stanley Children’s Hospital, which had become a home away from home for the family.
Mr. Cotter turned the phone around, revealing more than a dozen health professionals who make up what’s known as the heart failure team.
Ms. Cotter instantly knew what it meant.
“All I could say was, I knew it, I knew it was going to happen this weekend,” she said.
Their 1-year-old son was about to receive a new heart.
On the Facetime call, the team informed Ms. Cotter they had accepted the offer for a donor heart for Everett, who had been undergoing care at the hospital since mid-December when he developed Dilated cardiomyopathy.
Dilated cardiomyopathy is a disease that causes an enlarged heart that is unable to pump efficiently and reduces the amount of blood that is pumped to the body, according to Cincinnati Children’s Hospital.
Within hours of Ms. Cotter receiving that Facetime call, they were bringing their son down to the operating room where doctors began to perform the multi-hour transplant surgery that will likely save Everett’s life in the nearly the same way as his sister. Sometime in the early morning last Saturday, Everett officially had his new heart.
Ruby, now 3, had been diagnosed with the same condition and had a lifesaving heart transplant in 2020. Ruby’s birthday is June 12 and Ms. Cotter had a hunch she was going to receive the good news then after a six-month wait.
Ms. Cotter said that her son received an ABO incompatible transplant. This means that, although Everett has an O blood type, the donor heart he received is an A blood type.
“The reason he could do this was because he is so young,” she said. “He still hadn’t developed a certain level of antibodies to that blood type so that kind of made him lucky, in a sense, because we had more options available to us.”
Although this lifesaving heart transplant has brought the Cotter family so much joy and relief, they are painfully aware about what it means for the donor’s family.
The Cotters don’t know where the donor came from, as that information remains confidential throughout the process.
On Instagram, the couple wrote: “I can’t help but to think of the grieving family that his heart came from. I hope in their pain and sadness, there is some peace. Whoever you are, we love you.”
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When it became clear in December that Everett needed a heart transplant, it was simply a matter of time for when the right heart became available. In the meantime, Everett had been the eighth pediatric patient to receive the Jarvick ventricular device in December, Mr. Cotter said. The device, also known as a “booster pump,” aids the heart’s left ventricle in pumping out blood. The Jarvik 15MM was designed specifically for pediatric patients and is about the size of an AA battery, according to Jarvik Heart, the company that produces the device.
This device was the main difference between the two siblings, Ms. Cotter said. When Ruby had her heart transplant, doctors had used a Berlin Heart Ventricular assist device which was very restrictive because of its large size, Ms. Cotter said.
“The difference really came down to the device,” she said. “The Jarvik versus the Berlin.”
“The whole unit is a two-ton unit that was attached to Ruby and the device was mostly external, whereas Buddy’s [Everett’s] device was mostly internal and the outside part was this little battery pack,” she said. “So what that allowed him to do was be very, very mobile, it gave him a much better quality of life while waiting.”
As this is the second time the Cotters have gone through this ordeal, and since they have received so much support from the North Fork community during these times, they keep their followers up to date on Everett’s status on their social media accounts.
How to Help: GoFundMe for Cotter family
A few weeks before his transplant, the family had a scare when Everett’s health began to decline. On May 29, the family shared on Instagram that aside from having contracted parainfluenza, tests had shown that the Jarvik wasn’t supporting him fully anymore and they had to increase his settings on the device and adjust his medications.
“They went up on the device, and it was like night and day from what was going on the few weeks before this point,” Ms. Cotter said. “We’re glad they figured it out, because he was just in such a better place to go into transplant, after getting a little bit of rest and getting a break from working so hard.”
Since the surgery, Ms. Cotter said Everett is exceeding expectations. She said he is currently on medication to support heart function, which they need to discontinue before getting discharged. She said they will determine that with an echocardiogram in a few days.
She said another important component to getting him discharged is making sure to get his immunosuppression in a good place. He also needs a biopsy to make sure his body is not in any level of rejection to the organ, which is typically done two weeks after the transplant, to be able to be sent home.
Ms. Cotter said that it is possible that he could be returning home in two and a half weeks depending on the outcome of the biopsy.
In their latest Instagram post Thursday, the family posted a smiling Everett in his hospital crib, with a bin of toy blocks in front of him.
“The comeback kid,” they wrote. “He’s unbelievable. He’s incredible.”