On the morning of Sept. 4, newborn Ruby June Cotter woke up feeling ill. Her parents, Ashley and Brian, thought at first it was something minor.
“She was just not herself and she was pale,” Mr. Cotter said in a phone interview Monday.
The symptoms quickly gave them cause for concern.
“She was kind of cold, her limbs were cold and her body was hot, so, we had thought she had a virus or something,” Mr. Cotter said. “She wasn’t eating, she was dry heaving and she had never thrown up before, so we called her pediatrician.”
The pediatrician directed them to rush Ruby to the emergency room at Stony Brook University Hospital.
The situation quickly escalated and the Cotters realized their young daughter was facing a potentially life-threatening heart condition.
She had yet to turn 3 months old.
“Once we got to the emergency room, it escalated very, very quickly,” Mr. Cotter said. “She went from being pale to basically being blue. They intubated her immediately and sent her to [intensive care] and they did an [echocardiogram] of her heart and realized that they had to send her to NewYork-Presbyterian because they have one of the best heart care centers in the country.”
Ruby, who turns 6 months old on Dec. 12, has spent every day since at NewYork-Presbyterian Hospital with her parents by her side, unable to return to her Wading River home. Since her condition became public, community members and businesses have rallied to help support the family through fundraising events and crowdsourcing through GoFundMe.
Ruby was transported by ambulance from Stony Brook to NewYork-Presbyterian. When her parents arrived to meet her, the doctors quickly determined that Ruby was suffering from dilated cardiomyopathy, a condition that affects the heart’s ventricles and atria, stretching and thinning the left ventricle, the heart’s main pumping chamber, according to the American Heart Association.
That means the heart’s muscles aren’t contracting normally, making it difficult to pump blood and, over time, weakening the heart. Ruby has been on and off what Mr. Cotter described as “a million” medications over the past three months, including morphine to keep her calm and sedated and milrinone for her heart. The medication allows her heart to get as much rest as possible.
“They had told us, initially, that out of the patients that come in with dilated cardiomyopathy, a third of them don’t need anything, a third of them need medicine their whole lives and a third will need something drastic like a heart transplant,” Mr. Cotter explained. Doctors hoped Ruby would fall into the second category, so they withheld food and kept giving her medication. When they felt they could reintroduce food to her body and take her off the sedatives, Mr. Cotter said, it backfired.
“They realized immediately that her heart wasn’t going to heal with medicine,” he said. “They needed to give her the Berlin Heart and put her on the transplant list.”
Today, Ruby is getting taller, gaining weight and reaching milestones comparable to infants her age because of that Berlin Heart, a ventricular assist device that monitors and maintains blood flow in children with serious heart failure. However, she is still in dire need of a heart transplant.
“If it wasn’t for this,” Mr. Cotter said, “I don’t know where we would be right now … We are able to hold her and play with her. We can’t really leave the room, the way the machine works and the way the tube is and her IV medications, we can’t really go too far, but we can pick her up and hold her out of the crib.”
Mr. Cotter said the one thing Ruby is missing out on is “tummy time,” important for infants and toddlers to develop and strengthen neck and shoulder muscles and promote motor skills.
Since hearing of the Cotter family’s struggles, many longtime friends have surfaced, organizing donation pages and putting together blood drives like the one at Shoreham-Wading River High School last month. A flyer for the drive said that each donation would help save up to three lives. Mr. Cotter said around 101 people donated blood. His mother’s friend Angela Albergo Houlihan organized a GoFundMe page with a $40,000 goal just days after the Cotters took Ruby to the hospital. The money was designed to ease the family’s financial strain and supplement funds for Ruby’s medication, back when doctors thought medication might be enough.
“We got to the hospital Sept. 4 and then on Sept. 11 they had decided that the medicine wasn’t going to work and she was going to need a Berlin Heart and a heart transplant, so, my mom’s friend changed it to $100,000,” Mr. Cotter said. “We didn’t ask for it, it wasn’t something on our minds, but I’m really thankful that she did because my wife and I both took a leave of absence from work to live at the hospital here with Ruby.”
Mr. Cotter works as a traditional guardsman at Francis S. Gabreski Air National Guard Base, in both a part-time military capacity and as a full-time military contractor. Ms. Cotter works in a quality assurance position at American Regent Inc. in Shirley, where she oversees the manufacturing processes of sterile, injectable drugs.
To date, 1,200 people donated a total of $100,449 to the GoFundMe campaign — money, Mr. Cotter said, that is paying his family’s mortgage and car payments. He and his wife sold one of their cars in order to better manage funds.
“We didn’t expect to be here this long,” he said, “but it’s about three months and it looks like we’re going to be here a while longer.”
The Shoreham-Wading River girls volleyball team hosted a fundraiser in October during its match against Center Moriches. Local businesses like North Fork Doughnut Co. are taking to social media to spread the word and ask for donations, too. The staff created the RUBY doughnut last week and made it available all week long, with all proceeds benefiting the Cotters.
“So many things are popping up for us … someone decided to do a blood drive, my wife’s friend from high school. She put it together and a lot of people showed up,” Mr. Cotter said.
Mr. Cotter said the volleyball fundraiser was titled “Rally for Ruby.”
“A lot of people donated baskets and they had a big raffle,” he said.
Mr. Cotter called the support incredible, saying that people have been driving into the city to drop off care packages filled with toiletries, slippers and food.
“We can inquire about her position [on the list] … but we don’t because we kind of go day-to-day with our daughter and care for her and we don’t want to be sitting around waiting and having something else to make us anxious. We’re kind of just waiting for that one day where the doctors come in and tell us that there’s a heart available because otherwise, I feel like we would obsess over when it’s going to happen.”
Mr. Cotter said Ruby smiles and laughs, babbles like a normal baby, and is starting to grab items and play with toys.
“I even think at this point she recognizes her name,” he said. “She’s a smart little girl. This doesn’t seem to be holding her back in a lot of ways.”