Shoreham toddler who received heart transplant to soon get baby brother

For Christmas this year, toddler Ruby Cotter is getting a toy kitchen, a ball pit and a baby brother.

Ruby will become a big sister not having met many other children in her 18 months of life, according to her dad, Brian Cotter, 36. She’s been isolated to protect her weakened immune system that is compromised by medication she will need to take indefinitely to stop her body from rejecting the donated heart she got in transplant surgery last Christmastime.

She’s played with older cousins a few times, and one friend she’s seen once or twice a month, Brian said, but "otherwise she doesn’t interact with kids. Her brother will hopefully help her get used to that."

Ashley Cotter, 30 — Brian’s wife and Ruby’s mom — is pregnant with the couple’s second child, a boy they plan to name Everett Charles.

"We are thinking we might be welcoming him on Christmas," he said.

(The baby was due this past Wednesday, "so she could go into labor at any minute," Brian said. She will be induced if she doesn’t give birth naturally by next Thursday, he said.)

Ruby has a rare, potentially fatal disorder called dilated cardiomyopathy, which restricts how blood is pumped to the body and vital organs. The disorder affects at least 1 in 100,000 children. She was born in June 2019 and hospitalized in September at NewYork-Presbyterian Hospital, in upper Manhattan, where she had two heart surgeries; the couple lived in the hospital for months to be with their daughter. She came home in January to Wading River, where the family lived at the time.

The couple, who have since moved to Shoreham, had discussed last year having more children, Ashley told Newsday last Christmastime, but wanted to do more genetic testing to figure out the odds a sibling of Ruby's could develop the same heart condition.

"I don’t want to go through this again," Ashley Cotter said then. "I don’t want to put another child through this again."

Brian said earlier this week that the couple did that genetic testing, and learned that the condition isn’t in their genes.

"Well, to be honest, this pregnancy was not planned. We lived at the hospital for a long time without privacy and then the whole COVID lockdown happened," Brian said. "We did finish our genetic testing and found out that neither of us carry what caused Ruby’s condition. So far, our son looks very healthy."

The majority of cases of the disease are idiopathic — meaning, arising without a known obvious cause — rather than hereditary, according to a 2014 article in the journal Progress in Pediatric Cardiology.

Brian said the family is planning to have Ruby’s doctors examine their son soon after he is born.

Her parents hoped that she could begin to see people in the spring, but the coronavirus pandemic has meant that the family must stay virtually isolated due to her medication.

"She hasn’t met too many other kids or babies, so it might be a shock for her," he said of her little-brother-to-be.

Still, Ruby is aware there’s something going on in the family.

"She knows something is happening," Brian said, adding: "She does rub and kiss her mom’s belly."

It’s the second successive Christmastime there’s been good news for the Cotters. Just days before Christmas last year, Ruby got the transplant, in time for the holiday.

A GoFundMe account set up in 2019 to raise money for the family's nonmedical expenses — food, bills, mortgage and car payments — had raised $114,055 as of this Christmas Eve.

With Ruby’s immune system medically compromised, the family has been careful about masking and social distance and other precautions. She was able to do outdoor activities when the weather was warmer and once went to a diner a month ago.

"Just her body language the whole time. Sitting in the booth, looking at all the lights. She was just smiling and eating pancakes and eggs. You can tell she appreciated it," he said.

But, Brian said as a second wave of the coronavirus hits the region, "now is not a good time to explore."

Last month, he said, Ruby started walking.

"She says a few words," Brian said. " ‘No’ is her favorite."

By Matthew Chayes

matthew.chayes@newsday.comchayesmatthew

Matthew Chayes, a Newsday reporter since 2007, covers New York City.