Atrial Septal Defects: Matthew’s Story

When Maria settled into a chair in a waiting room on the sixth floor of CHOP’s Main Building, she thought she was in for a long wait. The procedure to repair her 3-year-old son’s heart, she was told, was likely to take at least two hours.

matthewBut just an hour after Matthew was taken to the catheterization lab in CHOP’s state-of-the-art Cardiac Operative and Imaging Complex, a nurse came out and told her that the doctors were done.

“I started crying right there,” Maria says. “I knew it meant he needed open heart surgery.”

Diagnosis and comprehensive care 

Matthew’s journey to CHOP’s Main Campus began when he was just a week old. During a routine checkup at CHOP Primary Care in Kennett Square, PA, Matthew’s pediatrician, Henry Karsch, DO, found that Matthew had a heart murmur. Dr. Karsch referred Matthew to pediatric cardiologist Richard Donner, MD, at the CHOP Specialty Care and Surgery Center in Exton.

At first, Maria wasn’t too worried. “I didn’t think it was a big deal,” she says. “I thought it was going to be something they would just monitor every now and then.”

But when an echocardiogram revealed that Matthew had several atrial septal defects (ASDs), everything changed.

“There was not a day that I didn’t think about it,” says Maria. “I wanted to put him in bubble wrap, but Dr. Donner told me he would be OK and to treat him like a normal kid.”

Follow-up care; additional testing

Because some atrial septal defects — also known as “holes in the heart” in the wall between the upper two chambers — close on their own, Dr. Donner recommended that Matthew be monitored closely. 

During a follow-up visit a year later, though, tests revealed that the holes had gotten bigger. After further monitoring, Dr. Donner told Maria that Matthew would need a cardiac catheterization or open heart surgery to repair the holes.

Matthew’s medical team, including pediatric cardiologist Jeffrey Boris, MD, and interventional cardiologist Yoav Dori, MD, initially believed that cardiac catheterization would be the best choice for Matthew.

The plan was to use a catheter (a long, thin tube that is threaded through a vein and into the heart) to place tiny closure devices in Matthew’s ASDs. But based on the results of a special imaging test performed in the catheterization lab, the team determined that Matthew’s best option was, in fact, open heart surgery.

Open heart surgery 

In late April, Matthew had open heart surgery to close his ASDs. His surgeon, Stephanie Fuller, MD, is one of the cardiothoracic surgeons at the Cardiac Center, which also has one of the nation’s only anesthesia teams focused specifically on pediatric cardiac patients. The surgical team performs more than 850 cardiothoracic surgeries a year, with outcomes among the best in the nation.

“The doctors were so reassuring,” says Maria. “Dr. Fuller is amazing. She is a great person and a great surgeon. I couldn’t have asked for anything better.”

Matthew spent a week at CHOP recovering from his surgery. During his stay, he received frequent visits from the Cardiac Center’s Child Life, Education and Creative Arts Therapy staff, who specialize in helping children cope with the hospital experience.

“They made sure he had toys and Play-Doh when he was ready to play,” says Maria. “And before he fell asleep, they made sure he had a DVD to watch.”

Maria was also impressed with the nurses who cared for Matthew: “They were just so nice to him. They did anything they could to make him happy and comfortable.”

Ongoing care 

Like most children who have had an ASD repaired, Matthew should be able to lead a full and healthy life, with no restrictions on the types of activities he can enjoy. Dr. Boris will continue to see him once a year for follow up. When Matthew gets older, he’ll be able to transition his care to the Philadelphia Adult Congenital Heart Center, a joint program of CHOP and Penn Medicine that provides care for adults with congenital heart disease.

Maria is tremendously grateful to the staff at CHOP for making a difficult time in her life a bit easier — and for everything they did for her son.

“I truly believe it’s the care he received at CHOP that helped him bounce back so quickly,” she says. “We are so blessed to have CHOP.”

Originally posted: January 2014