NATHAN'S STORY

Perhaps the best word to describe the life of Karen and Eric Akiyoshi is "normal." The couple met at the Wintersburg Presbyterian Church in Santa Ana shortly before Karen graduated from UCLA with a bachelor's degree in English and Eric graduated from the University of Irvine with a degree in civil engineering. She sang, he played guitar, and love blossomed. Eric and Karen, both now 32, married in 1997 and purchased a home in Tustin. Eric, who had accepted a job in 1993 as a process engineer with the Irvine Ranch Water District, truly loved his job. And since both were bitten by the travel bug, they decided to wait several years to have children. But a delightful trip to Japan for this fourth generation couple in late March/early April 2001 resulted in a wonderful "surprise" pregnancy. And when Nathan was born on December 31st at 11 a.m., Eric proudly told everyone that his son was "made in Japan."

Indeed, the pregnancy was normal. The birth at St. Joseph's Hospital (where Karen was also born) went as expected, with Nathan weighing in at 6 pounds, 15 ounces and measuring 19 inches. Karen and Eric were ready to settle down and continue living their "normal life."

And then their world turned upside down.
At the baby's two-week check-up, pediatrician Anna Chavez, M.D., heard a heart murmur. She knew from experience that the loud, continuous sound of rushing blood could indicate a hole in the baby's heart. The news caught Karen and Eric by surprise, the baby had absolutely no symptoms indicating that anything was wrong. Dr. Chavez then referred the Akiyoshi family to Children's Hospital of Orange County (CHOC) for an echocardiogram.

"At that point, we were really concerned," recalls Karen. "Nathan was my first baby and I obviously didn't want anything wrong with him. While Dr. Chavez was very reassuring, in my mind I was thinking, 'Oh my gosh, this will affect Nathan the rest of his life.' It felt very scary."

The next week, Nathan had an echocardiogram, a test that can help determine the sizes of the chambers to see if there is a strain on the heart due to a ventricular septal defect (VSD) or an atrial septal defect (ASD). A meeting with CHOC cardiologist Melville Singer, M.D., confirmed that little Nathan actually had two VSDs and one ASD. Dr. Singer explained that an ASD is an opening in the dividing wall between the upper chambers of the heart, called the right atrium and the left atrium. Because of the hole in the dividing wall, too much blood flows from the left atrium through the right atrium and through the right side of the heart. This excess blood flows into the lungs, making the heart work harder. On the other hand, a VSD is a defect or hole in the wall that separates the lower two chambers of the heart. These are the "pumping chambers" of the heart and are called the ventricles. In the normal heart, the right and left chambers are completely separated from each other by a wall called the ventricular septum. However, in children with a ventricular septal defect, there is a hole or multiple holes in this wall. Dr. Singer told Nathan's parents that there was a chance the holes would close on their own. Nathan would be checked every two months and then every four months, and the parents were instructed to look for any red flags that there may be a problem including the baby not eating well and labored breathing.

"While it was pretty scary to think that my son had holes in his heart, Dr. Singer helped us realize that there wasn't any imminent danger, and the condition was not going to kill him. Eric and I felt a lot better," Karen said. "Another thing that helped was that one of my friends from church told me that she had had the same heart defect as an infant and under went surgery at 4 months of age. And 25 years later, she is totally fine. It didn't cause a problem at all. This was very reassuring to me."

The remainder of 2002 and early 2003 went surprisingly smoothly, with no change in Nathan's heart defects. However, there was a change in Karen's condition, she was pregnant again. And in her first trimester, she learned that Nathan's condition had also changed. An echocardiogram on August 3rd revealed that while the ASD had disappeared, the two VSDs were still there and causing another problem called a doubled chambered right ventricle. In essence, a mass of muscle in Nathan's right ventricle was actually dividing this part of the heart.

Karen and Eric suddenly realized that Nathan would need surgery sooner rather than later. The couple set a surgery date of September 15, 2003. They met with cardiac surgeon Mark Bleiweis, M.D., Medical Director of The CHOC Heart Institute on August 26th. Dr. Bleiweis has extensive clinical expertise in the operative and perioperative management of children with heart defects.

"This was probably the most helpful and incredible meeting we have ever had with a doctor," Karen recalls. "He is such a warm and loving person, in addition to being a specialist. When he greeted us, he immediately knelt down to Nathan and started talking to him. He made it a point to put us at ease, and it worked. He told us how long Nathan would be in the hospital, what to expect, the tubes, and everything about his pain medications. He answered all of our questions and was extremely nice."

Later that day, Patty Sheehan, R.N., the cardiac clinical nurse specialist, showed the Akiyoshi family around the pediatric intensive care unit at CHOC, and introduced them to a family whose son had just undergone his third heart operation. "It is really helpful for parents to talk to other parents about their experience. The father told us that it was really difficult, but we would get through it. He also said that everyone on the CHOC staff is helpful. And he was right," Karen says.

This observation was confirmed a few weeks later when Nathan arrived for surgery at CHOC. It was a little overwhelming for Karen and Eric, the thought of their little boy undergoing open heart surgery, including having to be placed on a heart-lung machine. Karen says the toughest moment on September 15th was watching Nathan being carried by the nurse to the operating room. Yet things became easier, and every hour a member of the operating room staff would come by the waiting room and give Nathan's parents an update on his progress. The operation began at 8 a.m. and concluded at 12:30 p.m.

"At 1 p.m., Dr. Bleiweis came into the waiting room and told us that he had closed up the VSDs, removed the muscle band that was creating the double chamber, and also took out a lot of scar tissue that was in the ventricle as well as some muscle bands on the aortic side," Karen says. "He said that the operation went smoothly." Perhaps Karen's biggest surprise was how great Nathan looked at 2:30 p.m. that day. Although he had five miles of tubes and wires, and a breathing tube, the toddler looked "great." He had good color and was resting soundly. For the next five days, Nathan recovered with the loving care of the highly skilled ICU cardiac nurses at CHOC. By Saturday morning, Nathan was on his way home .. and was thrilled to once again be in his familiar surroundings. Soon he was crawling around, then walking and smiling and laughing. "We all breathed a sigh of relief," Karen says.

Subsequent check-ups have revealed a very healthy little boy. And his parents couldn't be happier. "We tell everyone that we couldn't have had a better experience than the one we had at CHOC," Karen says. "Initially it was frightening and intimidating to be in a hospital environment, Eric and I had never been sick -- but we came to realize that it takes a special type of person to work with kids and in the ICU and with the parents because it could be very stressful.

"I was so impressed with the care that we received up until surgery and with Dr. Bleiweis, who would come in every day and give us the time we needed to talk and ask questions," Karen continued. "And the nursing staff was wonderful. We were lucky enough to have one nurse, Kelli Pearce, for three days and she was just great. She was warm and friendly, and yet told it like it is. We are very lucky and very blessed."

Next on the agenda? The birth of their second child, due in early 2004. Another blessed event for a "normal" Orange County family.

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