Having an advanced level of heart care right here in Richmond has very special meaning for 12-year-old Annelise “Anna” Kaikkonen.
The expertise and dedication of our Children’s Hospital Foundation Heart Center team saved Anna’s life – more than once. “They spent many, many hours working to come up with a plan to do surgery in a way that Anna would survive,” her dad, Bob, says thankfully.
The Heart Center provides the region’s most comprehensive care for children with heart problems and focuses on achieving exceptional outcomes and a healthy future for the babies, children and teens.
For Anna, who was sidelined for nearly a year after undergoing heart surgery at another facility, an exceptional outcome includes being able to once again attend school and enjoy many of the activities this brave and loving tween enjoys in life.
An eye on her heart
Anna has Down syndrome which puts her at higher risk for heart problems. Pediatric cardiologist Dr. William Moskowitz has managed her heart care since birth.
According to Bob, Anna was born with minor heart defects but they ended up not being major life-threatening issues for her. The year she turned 10, however, Anna was diagnosed with a thyroid-related condition called Graves disease. Thyroid problems are more common in individuals with Down syndrome and this particular disease can cause the thyroid to overproduce the hormones that keep the brain, heart and other organs working as they should.
“Once Dr. Moskowitz learned of her Graves disease diagnosis, he suggested looking at her heart in case it was affected,” Bob remarks. “And it was.”
Blood was leaking back in to the left chamber of Anna’s heart. While this issue (mitral valve regurgitation) typically requires monitoring rather than intervention, Anna’s case was serious enough that she needed surgery to repair her heart valve. At the time, CHoR did not have a heart surgeon, so Anna was referred to a surgeon in another state for the procedure.
Unfortunately, things did not go as hoped. The repair was not successful and Anna experienced serious complications. Soon after surgery, she began to have mini-strokes and these continued in the months that followed, especially when her red blood cell counts were low. She needed monthly blood transfusions to help and was required to be much less active than she was used to. She was in fourth grade at the time and was also unable to attend school.
Anna and her parents
Heart Center help
While Anna was home with these complications, Dr. Thomas Yeh, a senior board-certified cardiothoracic surgeon with nearly 20 years of surgical experience, began practicing at CHoR. He’d been recruited to lead the Heart Center and begin a pediatric cardiac surgery program in Richmond. With this advancement in surgical care, children like Anna no longer have to leave the area for cardiac surgery as they can get the expert care they need close to home. The center was established in late 2014 through a $28 million gift from the Children’s Hospital Foundation , the largest gift to pediatric health care in VCU’s history.
Soon after starting at CHoR, Dr. Yeh began collaborating with Dr. Moskowitz on a surgical solution for Anna and her particularly complex and delicate issues. It was while they were planning for her procedure that another serious issue was discovered.
“They were getting ready to do heart surgery to fix the messed-up mitral valve repair when Dr. Yeh suggested doing an MRI scan first to check her brain,” Bob recalls. “The MRI revealed that Anna has a rare brain disorder that the other surgeon had missed and she was not stable enough for the bypass machine required for surgery. This scan saved Anna’s life.”
The brain condition, known as Moyamoya disease, is a progressive disorder associated with Down syndrome. It affects arteries at the base of the brain and may cause brain problems (including mini-strokes), muscle weakness and other issues. Surgery to restore blood flow to the brain is the main treatment.
Luckily, things went well for Anna with this procedure and once she was stable enough – after much planning and coordination – Dr. Yeh performed the valve repair surgery.
“It went great,” Bob says. “Things couldn’t have gone better. They spent many hours coming up with a plan to make sure she was still with us.”
“The care in the intensive care unit and from Dr. Yeh and his anesthesia team was also wonderful,” he adds.
Anna’s recovery from the heart procedure was quicker than expected. Bob says they’d planned for her to spend two weeks to a month in the hospital, but Anna was able to return home in less than two weeks. He credits this in part to her desire to move past the pain of the past year, the boredom of being stuck at home, and her excitement about getting back to school and activities.
Bob says seeing Anna back in action after a medically complicated, stress-filled year is what he and his wife Karen will remember most vividly about Anna’s experience at CHoR. “There was a much higher chance of Anna not surviving the surgery, than surviving it,” he remarks. “It was such big relief that she made it through and was still Anna.”
Strong supporting cast
Soon after the heart surgery at CHoR, Anna was able to go back to school and be active again – which for her includes playing soccer with Richmond Kickers’ RVAccess, taking swimming lessons and bike riding around her neighborhood.
A year and a half later, Anna is in sixth grade and attends Bailey Bridge Middle School in Chesterfield. She continues to actively enjoy life and hopes to become a dog walker/pet caretaker in the future. Above all, “she wants to make people happy,” Bob says.
Anna will eventually outgrow the valve. She comes for check-ups every six months with Dr. Moskowitz and every year with Dr. Yeh. She also comes several times each month for testing related to blood thinning medication she needs for her heart.
Bob is quick to point out that Anna has had many other specialists from CHoR supporting her along the way. Through the years she’s had tonsil, adenoid and ear tube surgery, thyroid removal surgery, blood transfusions, other heart procedures and several MRIs, among other specialized services. He says it’s likely that Anna has been to every pediatric department at CHoR.
Providing all of the health care services a child may need under one umbrella is part of our mission to advance pediatric care in Richmond. For Anna and the many other children in our area with complex medical needs, having pediatric specialists and this level of care close to home can be life-changing. Luckily for Anna and her family, it was also life-saving. “We’ve had a lot of individuals from CHoR show a lot of care and dedication,” Bob says about Anna’s medical journey. “Everyone went out of their way to be sure she was taken care of. It’s been an overall sense of extraordinary care for Anna.”
The “Meet our Calendar Kids” blog series highlights children featured in CHoR’s Tid*Bits calendar. Join our mailing list to receive future issues of the Tid*Bits calendar and newsletters. We hope you’ve enjoyed getting to know Anna our featured patient for December 2017.