After Brian and Ashley Cotter went through heart surgery with their daughter, Ruby, two years ago, they were extremely cautious when they had their second child, Everett. And then the unthinkable happened.
“When he was a baby, we watched him so closely,” Mr. Cotter said. “It wasn’t until recently that we kind of stopped thinking about it, which is the crazy thing. We finally let go of thinking it could happen again, and then within a couple of months it did.”
They had undergone every test and scan possible and nothing showed Everett at risk for a heart complication. Everett was “thriving, happy, strong.” While the Wading River couple knew there was a chance a second child could suffer from a heart condition, the odds were slim, at around 1%.
“This was one of those things where it was a general consensus that it was a very low chance of this happening ever again to one of our children,” Mr. Cotter said. “When my wife was pregnant, we were very nervous about it, and then when he was a baby, we watched them so closely.”
Last week, however, the Cotters rushed Everett to Stony Brook University Hospital’s emergency room and he was quickly transfered to NewYork-Presbyterian Morgan Stanley Children’s Hospital in New York City.
Everett, at only 11 months old, was diagnosed with dilated cardiomyopathy and will also need a heart transplant, just like his older sister. He remains hospitalized, one room over from where his sister spent so many months. Dilated cardiomyopathy is a disease that causes an enlarged heart that is unable to squeeze efficiently and thus reduces the amount of blood that is pumped to the body, according to Cincinnati Children’s Hospital. In many cases, it is caused by genetics, although an exact cause cannot be identified in many children, according to C.S. Mott Children’s Hospital, part of University of Michigan Health.
On Friday, Everett underwent surgery and became only the eighth pediatric patient to receive the Jarvik ventricular assist device, according to Mr. Cotter. The device, also known as “booster pump,” aids the heart’s left ventricle in ejecting blood. The original device for adults was released nearly two decades ago. The Jarvik 15mm was designed specifically for pediatric patients and is about the size of a AA battery, according to Jarvik Heart, the company that produces the device. A clinical trial on the device began in the U.S. in 2018 and it remains in clinical trials.
Mr. Cotter said that he and his wife were leaning toward the Jarvik device instead of the Berlin Heart ventricular assist device that Ruby had two years ago because it was a lot less invasive. He was emphatic about how much he and his wife trust the doctors caring for Everett, or “Buddy,” as they lovingly call him.
“Neither me nor my wife want him to be stuck in a bed for six months … there’s no way to say how much we trust the doctors and the surgeons and the nurses here,” Mr. Cotter said. “They wouldn’t have recommended it for him if they didn’t think it was a good idea.”
Before doctors could perform surgery to install the Jarvik device, Everett’s heart nearly failed and he lost pulse for four minutes last Wednesday. Once he stabilized, doctors prepared for the surgery on Friday morning. Dr. David Kalfa, a cardiothoracic surgeon who performed the heart transplant on Ruby, led the procedure on Everett along with another surgeon who flew in just for the procedure.
Everett has now been placed on a list and is waiting to receive his heart transplant.
While the Cotters tend to Everett, as he recovers at the hospital, and Ruby, the North Fork community quickly joined together, as they did the first time. There is now an adopt-a-family fundraiser to help them during this tumultuous time.
The Cotter family openly shared their story when Ruby faced her own dire health concerns starting in 2019. Ruby had yet to turn 3 months old when she woke up feeling ill on a September morning, and the symptoms quickly escalated. They soon would find out that she was facing the life-threatening heart condition. Doctors told them at the time that a third of patients with her condition required a heart transplant.
On the morning of Dec. 22, 2019, the Cotters learned that a viable heart had been found for their daughter. She underwent successful surgery three days before Christmas and began her road to recovery.
Community members rallied to support the Cotter family when Ruby was undergoing treatment, even raising more than $100,000 through GoFundMe. As the family shared the latest updates on Everett, community members once again stepped up to offer support.
Molly Waitz of Cutchogue helped organize fundraisers for the Cotter family that made the rounds on social media. An overwhelming outpouring of support led the efforts to be consolidated to a GoFundMe, which has raised over $50,000.
The post was shared by local businesses on the North Fork as well, like the North Fork Doughnut Company in Mattituck on their Instagram account.
Kelly Briguccia, the co-owner, encouraged people to keep donating.
“I think they are such a wonderful family,” she said. “There’s no donation too small, everything is so appreciated by them, I know that they are so overwhelmed with the love that’s been coming in.”
The initial idea behind the fundraiser was to have gifts for Ruby for the holidays while the family cared for Everett, Ms. Waitz said. The goal has been “majorly fulfilled,” she said.
“I’ve had people from all over the country mail gifts to me to drop off for Ruby and some people have mailed gift cards,” she said.
Another North Fork business that donated was Coastal Plantings in Peconic. They did a full yard clean up at the Cotters’ home, Ms. Waitz said.
Kristen Reutter, account manager at New York Blood Center’s Westbury office, also organized a blood drive in honor of Everett and Ruby that will be held on the same date Ruby got her life-saving transplant two years ago, on Dec. 22. It will be held at Shoreham-Wading River High School from 4 to 8:30 p.m.
Updates on Everett’s status have been posted on Mr. Cotter’s Facebook and Instagram pages. On Monday, the Cotters posted that Everett is resting and healing and the Jarvik device is working well. Mr. Cotter sings and plays guitar in the hospital room and Everett opens his eyes every now and then to say hello.
He said the family is extremely grateful for all the well-wishes and help they have received.
“I can’t tell you how many messages we’re getting ‘hey, if you want me to walk your dogs,’ ‘if you need me to go grocery shopping for you,’ and a lot of it’s from people we know and a lot of it’s from complete strangers, people who we’ve never met before, people just willing to go out of their way to help us,” Mr. Cotter said. “Everybody’s been just incredible.”