"I have a special heart you know,” a vivacious four-year-old told the Irish Voice last weekend.
Little Adam was born with a rare congenital heart condition. It has been an extremely difficult first couple of years for Adam and his family, but things are getting better.
“It’s going to be a great Christmas this year,” said Adam’s mom Lisa.
Adam has been through several invasive surgeries since his birth. His last surgery was this past August, and since then Adam has shown signs of great improvement.
“Look at him, he is just like any other four-year-old,” laughs Lisa as her precious son drags his little two-year-old sister into the living room to play with their Lego.
Over a fine lunch spread last Saturday at their Yonkers home, Adam and his family shared with the Irish Voice the joy they now feel that their son is finally living a normal life.
Lisa, 39 and John, 33, are Irish immigrants. Lisa hails from Co. Cork and John from Co. Fermanagh. The happy couple met in a local establishment a few years ago.
When they became pregnant with their first child they shared the joy and excitement every couple experiences before the arrival of their unborn. However, their world came crashing down around them when Lisa was 35 weeks was pregnant.
A scan at St. John’s Riverside Hospital in Yonkers revealed that something was seriously wrong with their precious baby.
“I couldn’t believe what I was hearing,” said Lisa with a heavy heart.
“The nurse kept telling me the numbers were not adding up and I’d need to have further testing.”
Everything happened very fast after that. They were transferred to Columbia University Hospital in Manhattan where they discovered that their soon-to-be born baby had a serious heart problem.
“We were devastated for sure,” shared John, a carpenter. “We really didn’t know what to expect.”
Adam was born at seven pounds, 14 ounces via caesarean section on March 23, 2007. That day he was diagnosed with Pulmonary Atresia with Intact Ventricular Septum.
“It basically means that the right side of Adam’s heart never developed because he has no pulmonary valve and the blood couldn’t pump from his heart into his lungs,” explains Lisa, a waitress.
From that day on Adam and his parents spent the next two years in and out of hospital, doctor’s offices and emergency rooms in an effort to save his life.
He had his first open heart surgery when he was just 12 days old. They inserted a shunt to redirect the blood into his heart.
Unfortunately during that surgery damage was done to his right diaphragm, paralyzing it, causing further complications.
When Adam was finally released from the hospital into his parents’ care they were a nervous wreck.
“At three weeks old we brought him home from the hospital with feeding tubes (in his throat) and had to give him 18 medications a day via a syringe,” explained John. “He was back in hospital the next day.”
And this back and forth continued for a solid two years.
Looking back, the couple find it hard to remember how they even got through those times.
“It’s not easy watching your baby go through all this,” said Lisa sadly.
In total Adam had three open heart surgeries, the last one in December.
“It’s very hard to see him go through all these surgeries, but he was amazing,” added John.
For the young couple life as they knew it was put on hold.
Lisa had to give up working. Their social life became non-existent, and all they did night and day was care for their sick child, praying every night before bed that their son would make it another day.
“For the first six months of his life Adam would vomit 15-20 times a night. It was horrifying for him and us,” Lisa said.
It was at that time doctors decided it was best to insert a stomach tube into Adam’s little body to help him feed better. They also did a further surgery that consisted of wrapping his esophagus around his stomach to prevent him from vomiting.
“He was so small to be going through all this,” said Lisa, who gave birth to their daughter Sophie two years ago.
“It was hard to see any light at the end of the tunnel.”
But Lisa and John have found the light. As Adam has progressed from strength to strength during the past year, it has given them tremendous hope that his future will be bright and cheerful.
“He can’t play any contact sports and always has to be germ free and his health monitored, but he is doing so great this year,” said the Cork native.
Lisa has a sister and brother living in the U.S. They were a great help to the family through everything and still are, but John has no family and that’s been difficult.
“You miss having family around at a time like this,” said the Fermanagh man, who has been living in New York for 12 years.
Spending an afternoon in Adam’s presence would never lead you to believe that the little boy is sick. He is full of energy, loves playing with and tormenting his sister, can’t get enough food into his mouth and loves telling stories to visitors.
“Adam is the kind of kid that just keeps going,” said Lisa. “He never tires out.”
“I’m a big boy now,” Adam told the Irish Voice while stuffing a ham and cheese sandwich into his mouth.
“And guess what? I got my tube out,” he shared by lifting his shirt up to show off his scare.
“Look, it’s gone,” he said proudly.
Adam spent the remainder of this summer in his back garden topless just like his cousins when they come to visit.
“I was born with a booboo but it’s getting better,” he said happily.
Adam started school in August and is enjoying every moment of it.
“School is fun and everyone there loves my sister,” he said while pulling in Sophie for a hug.
Although Adam is doing very well, he will never be out of the woods. He has to be constantly monitored, has routine EKGs and echocardiograms. His check up last week revealed a moderate leak in a new pulmonary valve in his heart.
“It’s not something the doctors are too worried about but we’ll have to keep an eye on it,” said Lisa.
He also attends physical and occupational therapy twice a week.
Both John and Lisa are excited to finally have a normal Thanksgiving and Christmas this year. John’s parents arrived from Ireland last weekend to spend Thanksgiving with the family and the kids are all set for Santa Claus.
“We’re hoping this Christmas will be stress free,” said Lisa who has spent the past few years highlighting heart disease among friends and family.
“I want people to be aware about it,” she said.
“It’s a hidden disease I guess and heart disease is the number one birth defect in this country.”
Adam, aware that he is lucky to have had surgeries and other kids aren’t so lucky, wanted to donate all presents from his fourth birthday party to congenital heart disease.
“I like to help other kids get fixed too,” he shared.
They raised nearly $4,000.
“We want more than anything to bring awareness to heart disease. This child has been through so much and he deserves his story to be told,” said Lisa.
John would urge anyone who is considering donating to a charity for Christmas to think about helping kids with heart disease.
“It’s a fantastic cause,” said John.
Lisa would also like to reach out to other parents who have children with heart disease who just “need someone to talk to.”
“I’d like to be able to help other parents in our situation. It helps, believe me, to be able to talk about it to people who understand.”
“Our beautiful son has had three open heart surgeries and three stomach surgeries and fights the fight every day, His heart may not work the same as ours but his smile would light up a room,” smiled Lisa.
To contact Lisa email firstname.lastname@example.org.
To donate to heart disease visit www.childrensheartfoundation.org.