New Hope for Children With Aortic Valve Disorders
STANFORD -- When Claudia and Tom Yore discussed having a third child, the clincher came from Claudia, who said, "Let's do it. He's going to be our easy third."
That's not how it played out, and that's OK. Today, they know that easy isn't always better. Oliver was born with an aortic valve issue and spent four and a half months in the hospital. His heart was expected to give out, and he was shortlisted for a heart transplant at birth. No donor heart ever became available, yet he survived.
"It's been a challenge for our family, but he has brought us all together. He's a connector," Claudia says. "He's like a magnet of good energy. Everyone gravitates toward him."
Tom recalls a trip they took to Mexico as a family. On the last day, they were walking around the resort, and nearly everyone they passed greeted Oliver. "That's just who he is," he says.
Not only did Oliver's heart continue pumping when he was a baby, a toddler, and even a preschooler, but it chugged along for 11 years until it finally showed serious signs of failing last May.
"This little boy has been slowly going into heart failure, yet he has been doing everything and anything," says his mom, Claudia. "We never viewed him as a sick child. We didn't know how he kept going, but he did. He surprised everyone, even his doctors."
It's as if Oliver were holding out for something new and better to come along. Ask nearly every cardiologist in the country what the options are for aortic valve replacement, and they will likely say a manufactured mechanical valve or a tissue valve created from a pig or cow. Hardly any know about the third, more promising option, of crafting a new aortic valve from the patient's own tissue, called the Ozaki procedure after its creator, Shigeo Ozaki, MD, professor of cardiothoracic surgery at Toho University's Ohashi Medical Center in Tokyo.
The family talked with Stanford Children's Health pediatric cardiologist Beth Kaufman, MD, at length about their options. Traditional valve replacements come with the price tag of foreign material placed in the heart—risking rejection—and medicines, like blood thinners.
"We disliked the idea of blood thinners because they would rule out contact sports," Tom says. "Oliver's a great athlete—he always has a ball in his hand."
Dr. Kaufman brought together a multidisciplinary team of heart experts, including the Pediatric Advanced Cardiac Therapies program, also known as the heart failure team, to determine the best next move for Oliver. That was when Katsuhide Maeda, MD, cardiothoracic surgeon, suggested trying the little-known Ozaki procedure.
"I arranged for Dr. Ozaki to come over from Japan and perform the surgery with me," Dr. Maeda says. "It was a wonderful chance to bring the very best treatment options to our patients here at Stanford Children's Health."
The Ozaki procedure would repair Oliver's faulty aortic valve, located at the exit from the left ventricle, the heart's largest pumping chamber. The complicated surgery is fairly rare for adults and nearly unheard of for children. Only a few children on the West Coast have had the procedure done, including Oliver.
"We are so grateful that Stanford Children's Health gave us this remarkable opportunity," Claudia says. "When we researched it, we didn't find any information, which was pretty nerve-racking. But we had confidence in Dr. Maeda."
During the surgery, Dr. Maeda cut a piece from Oliver's pericardium, the fibrous membrane surrounding his heart that's not essential for heart function. Then, he removed his diseased aortic valve leaflets. After taking precise measurements, he cut and created three leaflets for a new heart valve from the pericardium and carefully stitched them into place. The surgery took approximately four hours.
"Recovery was insanely quick. Within 12 hours he was sitting up, talking and being his animated self," Claudia says. "He's now six weeks out, and he's already running around, practicing tennis, playing basketball, and wrestling with Chief—our dog that he calls his bestie."
Today, Oliver's aortic valve is functioning close to normal, the best it has ever worked. Before the surgery, he was experiencing a 30 percent backflow of blood into the heart.
Now, the backflow has dropped to around 5 percent, an average rate. His parents are thrilled that the Ozaki method allows for more normal blood flow and less chance of blood clots and stroke risk than traditional aortic valve replacements.
Plus, Oliver won't outgrow his new valve, since his natural tissue allows for continued growth and motion at the base of the aorta. Since the procedure is fairly novel, his doctors will have to wait and see how long his new valve will last, but they expect it to last at least 10 years.
Since Oliver's surgery, Dr. Maeda has performed several more. He is likely the only cardiothoracic surgeon in the western half of the United States to be trained by Dr. Ozaki himself, and one of a few to offer the surgery to pediatric patients on the West Coast.
"Now that we know it's an option for children suffering from aortic valve disease, we are wondering if we can apply it to other valves," Dr. Maeda says.
The Yore family of Los Gatos has made the trip to Lucile Packard Children's Hospital over 200 times, always with worry. Now, they have a new feeling to get used to—hope.
"Every time we went to the hospital, we braced ourselves for heart failure. Now, we get to hear about healing and possibilities," Tom says. "It's opened up our world."