It was Mother’s Day in 2006 when Rhonda and Wes Yamamoto brought their daughter to the Sam S. and Rose Stein Emergency Care Center at Rady Children’s Hospital-San Diego. They were worried about Jennifer, but they never expected the terrible news they were about to get.
“She was pale and she couldn’t sleep. She was throwing up,” Rhonda said. If Jennifer, 12, tried to lie down, she wasn’t able to breathe. She had to be propped up in bed with pillows.
Previously healthy and active — her favorite sport was gymnastics — Jennifer had been sick since the December before with what appeared to be a lung disorder. Short of breath and prone to bronchial spasms, it was believed that she had developed asthma. But over the months that followed her condition didn’t improve.
Still, when Jennifer’s regular physician advised the Yamamotos to take her to Rady Children’s, they were shocked by what they were told. Jennifer didn’t have asthma; her heart was enlarged, and doctors didn’t know exactly what was going on.
“The doctor told me, ‘Your daughter is in heart failure. It’s a good thing you brought her here today, because she may not be here in a couple of days,’ ” Rhonda said.
A rare diagnosis
Jennifer was suffering from endocarditis, a rare bacterial infection of the heart that was attacking her aortic valve. Not only is endocarditis an uncommon disease, it’s an almost unheard of diagnosis for someone so young.
“This is a very rare condition that is not often thought about,” said Raymond Fripp, M.D., the pediatric cardiologist who treated Jennifer then and is now her regular cardiologist. “It’s important to point out she was a healthy individual with what was assumed to be a normal heart.”
Complicating matters further were symptoms that didn’t seem
to have anything to do with a heart problem.
“The symptoms aren’t always related to the heart,” Dr. Fripp said. “Jennifer’s complaints were related to shortness of breath and the stomach.”
Jennifer really was fortunate to be at Rady Children’s. The medical center is the site of the largest and most comprehensive pediatric cardiology program in San Diego, Imperial and Orange counties. The Heart Institute at Rady Children’s provides state-of-the-art medical care to patients throughout life — from prenatal stages through adulthood.
“Jennifer’s diagnosis was made with an echocardiogram — we could see the heart and see the valve,” Dr. Fripp said.
An echocardiogram is a procedure that creates a moving image of the heart. It works the same way as an ultrasound does to produce a picture of a fetus.
During an echocardiogram, sound waves bounce off the heart’s walls and valves, and the recorded data shows doctors how well the organ is working and whether it has been damaged. Doctors can see the shape, texture and movement of the valves, as well as the size of the heart chambers. And what the echocardiogram showed Dr. Fripp wasn’t good.
“The valve was so badly damaged it could not be repaired; it had to be replaced,” he said.
A new valve
Jennifer underwent surgery the following morning and received a donor valve — called an aortic homograft. Today she’s a vivacious 16-year-old who is a cheerleader and sings in the school choir at El Camino High School.
“At that point when I was in the Hospital, prior to the surgery, I don’t remember much,” Jennifer said. “I was calm and peaceful. I felt like nothing was really wrong.”
What she does recall is her hospital stay and the special way Rady Children’s staff helped her to understand what she had just gone through.
“The social worker came in the ICU and brought arts and crafts. Then later on she would bring in a heart book and tell me, ‘OK, this is what’s going on with your heart. This is what was replaced,’” Jennifer said. “She would always bring arts and crafts and talk to me about what was going on. It was really fun. I still have a lot of the stuff we made.”
The new valve isn’t a fix that will last forever, however. An aortic homograft is expected to last from 10 to 12 years. Meantime, Jennifer has been monitored with twice-yearly echocardiograms and other tests to see how well the valve is working.
“It will deteriorate, and eventually she will have to have the valve replaced,” said Dr. Fripp. “So far it’s holding up very well, so we are very optimistic.”
Returning to Rady Children’s is just fine with Jennifer. She jokes about Dr. Fripp’s sense of humor and is happy to know she’ll be continuing her care there even when she’s grown.
“I’m really looking forward to going back to [Rady] Children’s as an adult,” she said.
And Dr. Fripp will be happy to see her, too. “She’s just an awesome kid,” he said.
The San Diego Union-Tribune Kids’ Newsday, October 2010