At 4 months, in April 2013, Jack needed heart surgery.
“That was a tough day,” says Cynthia. “You literally and physically have to hand your child over. But the nurses in the cardiac unit were angels. It was as if each one had multiple arms, because they were doing so many things at once. We never had any concern for his health because he was in such great hands.”
Jack’s surgery was performed by Dr. Jan M. Quaegebeur, a renowned pediatric cardiac surgeon at NewYork-Presbyterian Morgan Stanley Children’s Hospital and a professor of surgery at Columbia University Vagelos College of Physicians and Surgeons, who has since retired from the hospital. Though the surgery was successful and Jack had none of the other possible serious mental and physical issues, their dual medical journey was far from over.
Two years later, in 2015, Cynthia experienced an abnormal heart rhythm after the birth of her third child, a healthy boy named James.
Dr. Rosenbaum says patients who are born with congenital heart defects often need procedures throughout their lifetime. In Cynthia’s case, she had an enlarged right ventricle, which was affecting her stamina. Her condition necessitated a pulmonary valve replacement to reduce the strain on the right ventricle so it would eventually shrink.
“There can be subsequent issues patients aren’t always aware of when they’re younger, whether rhythm problems or an increased risk of heart failure,” says Dr. Rosenbaum, Cynthia’s cardiologist. “We don’t want to burden patients, but the message we try to convey is that conditions like tetralogy of Fallot require lifelong care. We want people to live fully, but to keep coming back so we can prevent problems before they become too difficult to correct.”
That was the case for Cynthia. “I always felt good physically, maybe because I didn’t know anything different, but now, I can actually go on jogs,” she says with enthusiasm. “I used to get winded just walking up stairs. Not anymore. The valve replacement made a major difference.”
Amazingly, it was Dr. Quaegebeur, who had operated on Jack just three years before, who also performed Cynthia’s valve replacement surgery.
Jack, now 5, is an empathetic first-grader who is always ready to offer a hug. Sometimes mother and son even compare the scars on their chests.
“Mine is red and bumpy but Jack’s is tiny — a very thin line you can barely see,” says Cynthia.
Yet Jack’s scar has played an outsized role in helping teach other children about heart conditions, and in forging a new path for Cynthia, who wrote a book, written in rhyme, called My Super Scar.
“The idea came to me one night when I was up late, rocking Jack back to sleep. It bothered me that when Jack was in the hospital for his surgery, there were no books to help young kids understand what it meant when another child was in need of surgery,” she recalls. “We wanted to be able to explain things to Chloe and her friends, to tell them why Jack had a scar on his chest. And I wanted Jack to know and other kids to know that this doesn’t have to be a burden — that it helps shape who you are.”
The book was published in 2017, and earlier this year, Cynthia and Jack went on a reading tour to local schools.
“I’d read the book, kids would ask questions, and Jack would show his scar,” she says. “I think he felt proud of it — it was his moment to show it off.”
Cynthia also writes a blog in an effort to provide help and support for parents of children facing serious medical issues.
Now, Jack goes once a year to see Dr. Zvi Marans, his pediatric cardiologist at NewYork-Presbyterian/Columbia University Irving Medical Center and an associate professor of pediatrics at Columbia University Vagelos College of Physicians and Surgeons.
“He knows Dr. Marans is his special heart doctor, the one that only he sees,” says Cynthia. “NewYork-Presbyterian/Columbia is interwoven into the fabric of who we are as a family. After everything we have been through, we are so thankful that we live so close to one of the greatest hospitals in the world. It truly has the best-of-the-best surgeons and doctors, who have always been so willing to provide the greatest care for myself and my son.”