With each passing week, Heather Gourley-Thompson felt her infant's heartbeat change. Nora's heart murmur, with an extra sound called a "thrill," grew more and more pronounced.
"I could feel it on my chest when I nursed her," Heather recalls, "like there was something rumbling or fluttering in her chest, almost like a butterfly."
Nora was diagnosed with a ventricular septal defect (VSD), a hole in the tissue between the heart's lower chambers, as a 2-day-old. After this diagnosis, doctors monitored her heart with fetal echocardiograms, waiting to see if the hole would close on its own.
Born 8 pounds and 9 ounces, Nora gained weight and maintained healthy skin color. The murmur and shallow breathing, particularly during nursing, were the only signs something was wrong.
Referred to CHOP
After one month, the VSD hadn't closed and so Nora's primary cardiologist referred her to the Cardiac Center at The Children's Hospital of Philadelphia. On Dec. 9, 2008, Matthew C. Schwartz, MD, and Meryl S. Cohen, MD, evaluated Nora. After the fetal echo, they had difficult news.
Because of its shape and location, the VSD was unlikely to close. In some cases, open heart surgery to fix a VSD is postponed if the infant needs to gain strength. In Nora's case, because she was otherwise healthy, the team recommended surgery soon.
While thankful for Nora's good health, the Thompsons couldn't help but be devastated.
"In some ways it would have been easier if she had seemed sick," Nora's mom says. "You have to trust the doctors 100 percent and go forward."
Within a few days, a Cardiac Center scheduler called, offering options for surgery before or after Christmas. The Thompsons decided to wait until January.
"I can say it now but I couldn't say it then: I was scared to death that this might be Nora's only Christmas," says Heather. "I wanted to be able to spend one Christmas as a family."
Preparation for open heart surgery
The Thompsons celebrated Christmas with Nora, their 5-year-old, Lily, and extended family. In January, they returned to Children's Hospital a few days before surgery for a pre-operative visit.
Nora had a full evaluation, including a fetal echocardiogram and an electrocardiogram. The family visited the Evelyn and Daniel M. Tabas Cardiac Intensive Care Unit and met with a cardiac nurse and surgical and anesthesia teams. This day was difficult for Heather and her husband, Alistair.
"Each of the teams tells you all the risks," says Heather. "In retrospect, it was good because they were so thorough and wonderful. The team approach is phenomenal. In the midst of all this awful stuff we kept thinking: At least we're here."
The teams also explained what to expect after surgery, at one hour, one week and so on. "I kept thinking, they can see past this, they can see the future, so I need to be able to," Heather adds.
Treating Nora’s ventricular septal defect
The Thompsons arrived early the morning of surgery. A nurse took them to the Cardiac Preparation and Recovery Unit, where they met with surgeon Stephanie Fuller, MD.
"We were a wreck, counting the minutes until we had to hand her away," says Heather. "Then Dr. Fuller came in and gave us both such a sense of calm. I took one look at her smile and I thought, 'everything is going to be all right'."
Anesthesiologist Laura K. Diaz, MD, arrived to take Nora to the operating room. "Dr. Diaz was smiling at Nora and picked her up just like Nora was her own daughter," says Heather. "Nora looked back at us over Dr. Diaz's shoulder, wrapped in her giraffe blanket, smiling and cooing, and it was awful. But I couldn't help but smile because I knew Dr. Diaz was going to take care of her."
The surgery lasted more than two hours. Then, "Dr. Fuller came walking in with a big smile and said, 'Everything went great,' and we fell apart," Heather said. "I hugged Dr. Fuller and said, 'I'm sorry, I need to hug you,' and she said, 'That's OK, I like hugs.'"
Dr. Fuller explained she had repaired the VSD with a DACRON (synthetic fiber) patch, stitching it over the hole, into the heart muscle, all the way around. She also stitched closed a small hole (a foramen ovale) between the upper chambers.
Heather will never forget when she saw Nora for the first time after surgery. "I put my hand on her chest above the bandage and I couldn't feel the murmur. It was amazing — it was all fixed."
Four days after surgery, Nora was home. "At first she had some pain," her mom says. "When she would hiccup or cough she would cry. Within a few weeks she was really fine."
Nora has a full life ahead of her. There are no restrictions on her activities. She will visit her primary cardiologist once a year. It's unlikely she will need surgery again, but if she does, the Cardiac Center team will be here for her.
Originally posted: June 2009
Updated: November 2013