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Ellie, 9, doing great after a ventricular septal defect repair at 2 months old.
Ellie Lim, 9, joyfully celebrated another heart-aversary last spring.
Like they would for a birthday celebration, complete with a cake, Egan and Elaine Lim marked the ninth anniversary of the open-heart surgery that saved their daughter’s life at only 2 months old.
“We celebrate it every year,” said Elaine. “The surgery was miraculous, and we see this day as a rebirth.”
Sept. 29 is World Heart Day, a commemoration by the World Heart Federation to raise awareness for cardiovascular disease, something that takes the lives of children and adults. One million babies worldwide are born each year with a congenital heart defect, according to the Federation, and many require surgery.
Heart surgery, especially for a tiny infant, is serious, and the Lims don’t hide from Ellie what she went through in 2015 to close a hole in her heart. They celebrate her life and courage. “The scar on her chest is visible, and we want her to see this surgery as something she was brave for,” said Elaine, the mother of two.
The Lims recall taking Ellie to her first well-baby appointment at 6 days old when her pediatrician detected a murmur that sounded serious. Harry Huang, MD, of Stanford Medicine Children’s Health Walnut Creek and Brentwood locations, immediately referred Ellie to a pediatric cardiologist for testing.
After multiple doctor visits and tests, by 2 weeks old Ellie was diagnosed with a ventricular septal defect (VSD), a hole in the wall (septum) that separates the two lower chambers of the heart (right and left ventricles).
“It hit us like a ton of bricks,” said Elaine, after learning that Ellie needed open-heart surgery. “We went into the cardiologist appointment with our bouncing little newborn and came out devastated,” as Ellie showed no symptoms or signs of a heart problem, she explained.
A referral to Lucile Packard Children’s Hospital Stanford
Six weeks later, Frank Hanley, MD, one of the world’s leading pediatric cardiac surgeons and executive director of the Betty Irene Moore Children’s Heart Center at Lucile Packard Children’s Hospital Stanford, performed Ellie’s open-heart surgery, one of hundreds he performs every year.
“It was the hardest two months of our lives,” recalled Egan. But the Lims found relief in knowing that the surgery would be done at Lucile Packard Children’s Hospital Stanford, which they knew was world-renowned.
“We wanted our daughter to have the best of the best. She was our first child, and nothing else mattered,” said Egan. “We were going to search every option. If we had to fly to Europe, we would’ve done it.”
Through their own research, the Lims knew Dr. Hanley was the best surgeon for Ellie, and they got connected to Stanford Children’s through a pediatric cardiologist whom they saw after Dr. Huang.
“Dr. Hanley was right in our backyard. One of the biggest reliefs came at that moment we knew that our daughter would have the best care possible,” Egan said.
“The sound of Ellie’s murmur was harsher than most, and I suspected she had a structural heart defect,” recalled Dr. Huang. “I don’t always refer a baby with a murmur to a cardiologist, but Ellie’s was different.
“It’s great to be part of a network where world-class cardiologists are available, if needed,” he added. “Stanford Children’s has great resources. If there’s an issue with a child’s heart, we can get them into capable hands quickly.”
A congenital heart defect
Ellie’s VSD was congenital, meaning it was a condition that existed at birth. It’s the most common type of congenital heart defect, and the cause is often unknown. Ellie’s wasn’t the largest VSD Dr. Hanley had ever repaired.
At a 3 on a scale of 1 to 10, Ellie’s was on the favorable end of the spectrum, according to Dr. Hanley. He sometimes waits until a baby is older to do surgery, but he acted quickly in Ellie’s case because the position of her VSD would soon cause problems. In addition to a VSD, which was the most pressing concern, Ellie had a double-chambered right ventricle, which Dr. Hanley also repaired.
Dr. Hanley fixed Ellie’s tiny heart in a procedure that took six hours, from surgery preparation until she was transferred to the intensive care unit. He praised Dr. Huang for quickly referring Ellie to a cardiologist.
“We have an extensive network of associates and colleagues at Stanford, and all of our pediatricians are the first line of defense,” said Dr. Hanley. “A pediatrician may see 100 kids with a murmur, and 99 are benign. The challenge is in knowing if it’s benign or needs to be seen by a cardiologist. That’s the benefit of our colleagues’ expertise.”
Dr. Hanley described a VSD in lay terms by comparing it to a hole in a wall separating two rooms, which represent the two chambers of the heart. “VSDs need surgery early because blood can escape between the two chambers of the heart.” Escaped blood, he added, would be pumped into the lungs, damaging them or causing heart failure. “Kids with this condition can get into serious trouble quickly,” he said.
He explained that closing a hole in the heart requires an infant to go on a heart-lung machine, which stops the heart and artificially pumps blood. A VSD repair also requires a skilled surgeon’s hand to apply a high level of precision when patching the hole.
“It is a delicate balance between secure closure of the hole without any leaks, and over-aggressive closure, causing damage to surrounding structures in the heart,” Dr. Hanley explained.
An expert team of cardiac care
“Lots of things can go wrong,” he added. “This isn’t a tonsillectomy or hernia repair; it’s serious surgery on tiny babies who struggle. That’s why we have the expertise in the Cardiovascular ICU. None of these kids would survive if we didn’t have minute-to-minute care 24/7 for the first 48 hours after surgery.”
The Stanford Children’s Cardiovascular Intensive Care Unit is staffed by a dedicated team of specialists who care only for children with heart conditions. In addition, pediatric anesthesiologists work solely with babies and children and allay any parent fears about kids’ undergoing anesthesia.
The Lims praised the team that cared for their daughter, from their very first interaction. “Stanford Children’s definitely gives hope to families,” said Egan. “We’re very fortunate and lucky to have Stanford close to us. We’ll never be far from the Bay Area because we know what Stanford did for us and the comfort it brought.”
While Ellie had to see her cardiologists annually for the first few years, she’s doing so well that she only needs a biannual visit and echocardiogram, which lets doctors see inside her heart.
The Lims describe their daughter as a normal, happy kid with a very big heart. “She has a very endearing quality about her. She’s full of empathy and compassion for others,” said her dad.
“I feel strong and confident that I was able to have my heart fixed,” Ellie said. “And very grateful I don’t have to worry about having heart trouble for the rest of my life.”
Dr. Hanley sums it up: “It’s gratifying when we get a card from a former patient at their high school graduation, or from a child who made the soccer team, or from a kid who celebrated an anniversary of their surgery. We recognize how much we altered a child’s life. It puts everything in perspective.”
Read more about how Dr. Hanley has helped children.
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