METHUEN — During her pregnancy, doctors had suspicions that not all was right with Tina Deegan’s baby.
They just didn’t know the extent of it.
JC (James Cole) Deegan was born at Beth Israel Deaconess Medical Center with a single ventricle. His aorta and pulmonary arteries were reversed, and an open passageway existed between the two arteries, which caused his lungs to fill with blood.
In his 19 months, JC has already had two open-heart surgeries.
According to Deegan, the operations enabled JC to live with a single ventricle by connecting the upper part of his circulatory system to his heart.
“His first surgery was when he was 10 days old,” said Deegan, 23. “He was in the hospital for about five days, and then we got to take him home for five days, and then he was back in for his first surgery.”
As a heart disease survivor, JC was featured in the American Heart Association’s Faces of Heart Disease and Stroke photo essay unveiled at the Merrimack Valley Heart Walk in Lowell on Sept. 29.
More than 2,000 people, including the Deegan family, participated in the walk.
“It was a lot of fun,” Deegan said. “I don’t know the exact number but I know at least $178,000 was earned and there is a lot of awareness out there. It was a fun day.”
Jennifer Natoli, American Heart Association communications coordinator, said the money from the walk itself has not been added, but it undoubtedly has pushed the total to more than $200,000, getting the AHA that much closer to its $300,000 goal.
Unfortunately, JC will be facing another surgery, connecting the lower half of his circulatory system to his heart, in a year or so.
“Hopefully that will be it,” Deegan said. “(The doctors) said when he’s in his early 30s he may need a pacemaker, but right now he has no problems with his rhythms or anything so hopefully that will be it.”
Deegan said finding out something was wrong with her son was the worst part.
“I was completely devastated,” Deegan said. “At the time (the doctors) didn’t know exactly what was going to happen — if he was going to be OK at first or if he was going to need surgery.
“We didn’t know how well he was going to do, and as time went on and he had his surgeries, he’s doing well. It’s not that easy, but a little more settling now because he is doing so well and looks like a normal kid. But it was hard finding out.”
JC is adapting to a normal life, but trips to the doctor aren’t exactly easy.
“He’s got really bad white-coat syndrome,” Deegan explained. “Anytime he goes to the doctor or anywhere if I’m going for an appointment he totally freaks out. And I think he’s more afraid of strangers now because he thinks everyone is going to be poking him. He’s a little more shy I think, but he’s pretty normal so far other than that.”
Deegan said JC also has one leg longer than the other, but otherwise is happy with his growth.
“He is going to see an orthopedic (surgeon) to see if he might need special shoes or something,” Deegan said. “Besides his leg, he’s growing like a normal baby. He’s not underweight, which a lot of babies in his condition are. So we’ve been lucky.”
Dr. David Brown at Children’s Hospital in Boston has performed all of JC surgeries.
“(Dr. Brown) is wonderful,” Deegan said. “He makes us feel open to be able to ask any questions without feeling like he is rushing us out the door. He’s really great, has a pleasant bedside manner about him.”
Deegan is fearful of JC’s next surgery, not because of the surgery itself, but because he will be more aware of his condition and surroundings.
“The first (surgery) was really hard because he was taken away from me,” Deegan said. “The next one is going to be hard because he is going to be 2 and he’s going to be stuck in a bed not being able to eat.”
Deegan and her husband James know eventually they will discuss JC’s history with him, but they simply want him to lead a normal life.
“We know that we don’t want to put limitations on him,” Deegan said. “All of the studies show how they do a lot better in life if they’re not restricted.
“The doctors have all told us when he’s tired and needs to take a break he will sit down, and that we don’t need to tell him to sit down because of his heart.”
Through the surgeries, one thing that was hard on the family was the fact her husband James, 25, an accountant in the Boston area, did not have a lot of time off built up and couldn’t always be there to support his wife. “It was really hard because my husband was working 60 hours a week,” Deegan said.
Deegan said for the most part their health insurance is covering a majority of the bills, but it recently denied payment for the ambulance and some of the lab work JC has needed.
Despite the small scars on JC’s chest, Deegan said her son is a happy toddler.
“His scars look really great right now. It’s very thin and blends in well with his skin,” Deegan said. “The only time you can notice it is when he’s cold; his hands and feet turn blue.
“He loves to wander and walk outside. He loves the park, especially the slide at the Tenney Grammar School.”
Deegan and her husband would like to expand their family.
“We want to start planning on having a new baby,” Deegan said. “(The doctors) don’t think it’s hereditary or anything. The doctors are pretty confident it won’t happen again.”
Deegan, who works as a nurse in Cambridge, said JC is cared for by grandmother Lori Simas, who just happens to be a pediatric nurse, when both his parents are working.
The American Heart Association is still accepting donations. Visit www.merrimackvalleyheartwalk.org or send a check to the Heart Association offices at 20 Speen Street, Framingham, MA 01701.