When their third birthday rolls around in a few weeks, identical twins Jack and Nathan Scarfo will be able to celebrate surrounded by grateful family and friends. It’s a birthday they never would have reached together if Jack’s congenital heart defect was not discovered in time and properly treated. “Did we think we’d have this outcome? It was doubtful,” said the twins’ mother, Lisa Scarfo. “As a father, you definitely think about not being able to play football with your son,” said the boys’ father, Donny Scarfo. Jack was diagnosed prenatally with Tetralogy of Fallot, a four-component heart defect consisting of a narrowed pulmonary valve, an overriding aorta, a ventricular septal defect and a thickened right ventricle. In Jack’s case, the most pressing concern was an extremely narrowed pulmonary valve, which was successfully widened and patched when he underwent surgery at 3 months old. However, Jack might be required to have the surgery again when he hits adolescence, Mrs. Scarfo said. And, according to the American Heart Association, most babies born with little Jack’s condition are unable to survive without surgery within the first few months. At just three months, Jack had open heart surgery. “We went to the doctor when I was pregnant for a routine exam,” Mrs. Scarfo said. “It was because we were having twins that we were going to get a closer look and confirm the sex of the babies. We never thought we’d get news like this.” One doctor told the Scarfos that their unborn infant would have some kind of syndrome while another told the couple that it was possible the child wouldn’t make it to birth.
Lisa Scarfo kisses her 2-year-old son Jack at their West Scranton home. Born with a congenital heart defect that was required surgery when he was a few months old, Jack will be this year’s American Heart Association Heart Walk Child Chairperson. – Butch Comegys / Staff Photographer
Unexpected News
Making matters more complicated was that Mrs. Scarfo was carrying twins, she said. “I was thinking that I’m just 29, I don’t smoke or drink and I took all of my vitamins,” Mrs. Scarfo said. But, it wasn’t the end. After giving birth at 34 weeks and her son undergoing successful surgery, Mrs. Scarfo, 32, said things have turned out quite well. Jack and Nathan run and play like many other young siblings. Jack is also this year’s American Heart Association’s Heart Walk Child Chairperson. The soon-to-be 3-year-old will be on hand as team “Jack of Hearts” leads the Heart Walk April 30 at Nay Aug Park in Scranton and May 14 at Kirby Park in Wilkes-Barre. Team Jack has already raised more than $7,000 for the heart association and the toddler is also scheduled to attend the annual Heart Ball May 21 at Glenmaura National Golf Club. “Jack is the chair and he is being used as the face of this,” Mrs. Scarfo said. “He doesn’t understand yet what has happened to him and what’s interesting is that one of the first toys he played with was a stethoscope.” A mission of the Scarfo family is to raise awareness and funds for congenital heart defects. “With congenital heart defects, there is no cure. Although Jack’s defect was surgically corrected, he still has a heart defect and will live with that for the rest of his life,” Mrs. Scarfo said. “He will have limitations, may need medication, and will be under the care of a cardiologist for the rest of his life. It’s a common misconception that once these children have their surgeries, they are (considered) cured.” Mr. Scarfo, 35, and his wife both admit they were fortunate to find out about their son’s condition before he was born. “Some children are sent home from the hospital without being diagnosed,” Mrs. Scarfo said. According to the American Heart Association, there is a simple and noninvasive test known as a pulse oximetry that can be used to detect levels of oxygen in the blood. A normal oxygen saturation level is 100 percent while anything less can indicate a heart defect. “Jack’s levels were in the 90s and prior to his surgery we took him to the pediatrician every other day to make sure they weren’t getting any lower, which is a sign of heart failure,” Mrs. Scarfo said.
Following a prenatal diagnosis, open heart surgery, Scranton toddler to lead Heart Walk at Nay Aug Park.
Legislation Needed
However, the test isn’t part of Pennsylvania’s newborn screening, which must change, she said. “Some states have recently introduced bills to include this test, which can potentially decrease the number of newborns sent home from the hospital with an undiagnosed heart defect. We plan on working with other heart families to introduce a bill into Pennsylvania’s legislature,” Mrs. Scarfo said. The stunning news of Jack’s condition and his recovery was quite a reminder to the Scarfo’s of the roller coaster ride they’ve been on since before they married seven years ago, Mrs. Scarfo said. “Shortly after we started dating, Donny was deployed to Bosnia with the Pennsylvania National Guard. He was deployed for about a year, and then home for year or so,” she said. “We got engaged, and started planning our wedding, and then shortly after that (Mr. Scarfo) was deployed to Iraq.” The couple started a massive renovation of their West Scranton home only to learn shortly afterward that Mrs. Scarfo was pregnant with twins. “Why we thought starting a family would be simple when nothing ever really was before, I don’t know,” she said.
Meet Jack Scarfo
Family: Twin brother, Nathan, and parents, Donny and Lisa Scarfo
Activities: Playing with his brother and parents
About: Jack was diagnosed prenatally with a congenital heart defect called Tetralogy of Fallot. He has had open heart surgery and is doing well, his parents said. Jack is this year’s American Heart Association Heart Walk Child Chairperson. Local heart walks, which Jack will attend, are scheduled for April 30 at Nay Aug Park in Scranton and May 14 at Kirby Park in Wilkes-Barre. Registration for each event begins at 9 a.m. and the walk at 10 a.m.
To register a team, visit www.americanheart.org/northeastpawalk.
For more information, call 822-9438.
About Tetralogy of Fallot
Tetralogy of Fallot is a rare condition caused by the combination of four heart defects that are present at birth. These defects, which affect the structure of the heart, cause oxygen-poor blood to flow out of the heart and into the rest of the body. Infants and children with Tetralogy of Fallot usually have blue-tinged skin because their blood doesn’t carry enough oxygen. Tetralogy of Fallot is often diagnosed during infancy or soon after. However, Tetralogy of Fallot may not be detected until later in life, depending on the severity of the defects and symptoms. With early diagnosis followed by appropriate treatment, most children with Tetralogy of Fallot live relatively normal lives, though they’ll need regular medical care and may have restrictions on exercise. Tetralogy of Fallot features four problems: A hole between the lower chambers of the heart, an obstruction from the heart to the lungs, the aorta (blood vessel) lies over over the hole in the lower chambers, and the muscle surrounding the lower right chamber becomes overly thickened.
Source: Mayo Clinic website and The American Heart Association
