‘Generational gift’

Like any new parent, Karen Crowell cherishes the little moments with her 4-month-old daughter, Colette.

They attend baby yoga classes on Thursday, go for walks and spend time together in their home nursery. Colette recently discovered her toes — a milestone for babies around the four-month mark.

“Every little thing she does is just so captivating to me,” Ms. Crowell said.

As a heart transplant recipient, Ms. Crowell, 29, understands how fragile life can be. She learned at a young age to never take any moments for granted. Becoming a mother has only reinforced that as she experiences the joy in each of her daughter’s milestones.

Eight years ago, Ms. Crowell nearly lost her life as her weakening heart could only continue pumping with the assistance of a heavy machine known as a left ventricular assist device, or LVAD. She had been diagnosed with cardiomyopathy, a disease of the heart muscle, at age 11, when doctors discovered her enlarged heart by chance while doing an X-ray on her collarbone. She managed the progressive condition with medication over the next several years, but by age 21, she was told her only path to survival was a heart transplant.

“By the time I got to college, I got sicker and sicker,” she said.

In August 2014, Ms. Crowell joined thousands of other New Yorkers on the donor transplant list, all of whom were awaiting a miracle.

“I was starting to lose hope, but still hanging in there,” she recalled of that time period, at which point she had been on the waiting list about eight weeks. Ms. Crowell had recently graduated from Fordham University and her mother had been staying with her at her Bronx apartment. Her mother woke her up around 5 a.m. on the morning of Oct. 3, 2014.

She had a heart.

In the days that followed her life-saving procedure, Ms. Crowell saw the news headlines of how a 16-year-old football player from Shoreham-Wading River High School had died following a collision in a game. At the time, all she knew was that her heart had come from a 16-year-old boy. The timing aligned, so she wondered if it could have been his heart.

It wouldn’t be until about six months later that she learned the donor’s family had expressed interest in meeting her. In May 2014, she met the Cutinella family in Wading River and learned about the life of her donor, her hero, Thomas Cutinella, whose legacy now lives on in another generation through Colette.

Ms. Crowell, who now lives in Jersey City, recalled how “nerve-wracking” it was to first meet the Cutinella family.

“These people have done so much for you and you put pressure on yourself, like am I doing enough with this gift? Over the years I’ve come to realize just living my life to the fullest is hopefully enough,” she said in an interview Monday on the eight-year anniversary of receiving Thomas’s heart.

That Ms. Crowell would one day become a mother was never a given. She knew there were risks involved with pregnancy.

“Having grown up with this ailment, having children was initially discouraged because of the various medications you have to take and the risk of the organ rejecting,” she said. “I honestly just wrote [having children] off as something that wouldn’t happen for me.”

Prior to the pandemic, she and her husband, Cameron, traveled often and were busy with work. When the pandemic forced everyone into isolation, she began to think more about having children. She brought it up to one of her doctors, assuming the answer would be no. To her surprise, the medical team offered to support her decision and said they would help her take all the necessary precautions.

Last October, on the seventh anniversary of her heart transplant, she surprised her family with the news that was she pregnant.

Not long after, she texted Kelli Cutinella, Thomas’ mother, to ask if she had a minute to talk. Ms. Crowell and Ms. Cutinella had developed a close bond since they first met. The Cutinella family celebrated with her during various life milestones. They attended her wedding in 2018 and Ms. Cutinella ran the New York City Tunnel To Towers Run alongside Ms. Crowell, a story that was featured on the cover in the New York Daily News that same year.

Ms. Cutinella had seen Ms. Crowell in person not long before that text message and had suspected she might be pregnant.

“When she reached out she was so cute about it,” Ms. Cutinella said. “She’s like, ‘I have something to tell you.’ And of course, in my heart, I wanted it to be that she was pregnant. I was beyond excited and thrilled for her. It’s something I always wanted for Tom [to be a father], but to know that this gift of life that he gave her, she was able to continue on and leave her legacy as well with baby Colette.”

Ms. Cutinella said they are grateful how Ms. Crowell and her husband have welcomed them into their family. 

“It’s very humbling,” she said. “It’s a great honor and we appreciate this connection in this relationship.”

Ms. Crowell said her heart held up perfectly throughout the pregnancy. She stopped taking one medication as a precaution and underwent more than the usual number of ultrasounds and doctor visits so the medical team could closely monitor every step.

“It was a lot of hard work throughout the pregnancy, but ultimately it was all very carefully managed,” she said.

Her healthy baby was born May 26. At this point, there’s no immediate concern that Colette might develop any heart issues of her own, Ms. Crowell said.

In July, around what would have been Thomas’ 24th birthday, the Cutinella family met Colette for the first time at their Wading River home. For Ms. Crowell, it felt like bringing her daughter to meet family friends, though she would never forget the circumstances that ultimately brought their families together.

It was a perfect match for her to be his recipient because she’s really a remarkable person.

Kelli Cutinella

“I think the best part about having our daughter is just seeing how much joy she brings to everybody that meets her,” she said.

The two families spent an afternoon together and Thomas’ younger siblings, Kevin, William and Carlie, got to meet Colette.

“She’s absolutely perfect,” Ms. Cutinella said.

Saturday marked eight years since Thomas, while wearing his No. 54 uniform, was fatally injured in the Shoreham-Wading River football team’s game at Elwood/John Glenn. In the immediate aftermath and the years that have followed, the Cutinella family and community have rallied to preserve his legacy. The turf field at the high school was named in his memory. A monument stands near the field with a statue of Thomas from the waist up, wearing his football uniform. To this day, the football team sprints onto the field each week with one player carrying the No. 54 flag that flies on their sideline. “Tommy Tough” is now the motto and standard for every SWR football team. The Thomas Cutinella Memorial Foundation formed in his memory gives back to the community in multiple ways, such as scholarships for students, and by working to promote safety in high school football. On Sunday, Oct. 16, the foundation and Wildcat Athletic Club will host the 2022 Patriot Run at Wildwood State Park in Wading River in memory of Thomas and proceeds will go to the foundation. Ms. Crowell plans to attend with her daughter.

Part of the foundation’s goal is to promote the benefits of organ donation. Ms. Cutinella and Ms. Crowell have been strong advocates for LiveOnNY, a federally designated organ procurement organization for the New York metro region. The nonprofit works closely with organ donors and recipients at every step, including helping to arrange meetings between recipient and a donor’s family when both sides are ready.

Leonard Achan, president and CEO of LiveOnNY, said setting up a meeting between donor family and recipient is based on the readiness of the donor family and he noted it’s not something people always want to do. The organization’s role is to protect both the recipient and donor family, he said.

“But more and more, as our constituents and our community becomes a little more comfortable with organ donation, it happens more and more,” he said.

Mr. Achan said Ms. Crowell’s story disproves the “myth” or “urban legend” that a woman who receives an organ transplant can’t go on to have a baby.

“Thomas was able to prove that and see that generational gift, that it’s not a one-time gift,” he said. “You’re allowing people to live on and to continue your legacy as well as their own.” 

Ms. Crowell said she considers herself a typically reserved individual. So she laughed when asked why it’s important to her to share her story whenever she can.

“When it comes to organ donation I just think it’s so important, not even for myself, but for the sake of others,” she said. “The lives that you’re saving and the lives that you’re touching. It’s not just that one person, but it’s their friends and family who care about them whose lives are also being impacted by the gift of life.”

Ms. Cutinella said she continues to help with organ donation education, particularly for younger teens and to open dialogue with families as they had with Thomas. She credited LiveOnNY for being “an amazing facilitator” in keeping the relationship with Ms. Crowell going.

The Cutinella family carries Thomas’s memory with them every day, striving to celebrate him however they can. On the first three days of each October, their goal is to find something joyful as they reflect on the impact of each of those days: Oct. 1, the day of the football game; Oct. 2, the day he technically died; and Oct. 3, the day he gave life.

“We watch videos and try to listen to his voice,” Ms. Cutinella said. “You do a lot of reflecting. You have tears in there. But you have tears of joy, too, because you remember how wonderful he was.”

When Ms. Cutinella looks at Ms. Crowell, she sees someone who closely resembles the kind of person her son was.

“It was a perfect match for her to be his recipient because she’s really a remarkable person,” she said.

When Colette grows older, she’ll learn the story of Thomas Cutinella and how the teenager from Wading River, through his own sacrifice at a young age to sign up to become an organ donor, saved her mom’s life. Ms. Crowell keeps a picture of Thomas in their living room that the Cutinellas gave her when they first met, a reminder of how through one horrific tragedy, new life was born.

Ms. Crowell will share with her daughter the legacy Thomas left behind, the impact he had on his community and how he saved not only her life, but many more by donating both kidneys, liver, pancreas, both corneas, numerous bones, skin and tissue.

“If you choose kindness, you can make such a positive impact on everybody around you and be so well loved and respected within your community,” Ms. Crowell said. “So I just hope that she takes away that he was truly, through and through, a good person and to see the impact that can have.”