Separated by nearly 70 years, great-grandmother and great-granddaughter share “special hearts”

Emma Thill was nervous before getting her heart valve replaced, but knowing her great-grandmother Susan Engstrom also has a “special heart” helped the 9-year-old be brave.

Nearly 70 years of life separate Emma and Susan, 78, but this year they both received the same heart valve replacement within four months of each other – both using a non-surgical method that can benefit patients with several different conditions.

Emma was born with a rare congenital heart disease called tetralogy of Fallot and had surgery as an infant to patch multiple holes between her heart chambers. Children with this condition also have a narrow pulmonary valve, reducing blood flow from the heart to the lungs.

Pediatric cardiologists at M Health Fairview University of Minnesota Masonic Children’s Hospital monitored Emma since birth, waiting for the right time to replace her valve. While they had hoped to wait until puberty, they decided to replace her pulmonary valve earlier this year after she began having trouble keeping up with classmates on the playground.

“Once she started back at school last fall, we noticed that her energy level was lower. She’d get winded very easily,” said mother Kristina Thill. “Emma didn’t remember her first surgery, so she didn’t know what to expect. She was aware that her great-grandmother had a special heart, too, which helped.”

Treating a common condition in later years

Unlike Emma, Susan wasn’t diagnosed with a heart condition until later in life. She has cardiomyopathy, a disease which makes it more difficult for the heart to pump blood to the rest of the body, and had a pacemaker put in in 2012. While Susan had her valve replaced four months after Emma, her great-grandchildren had known about her “special heart” for a long time.

“Susan is great at explaining to all of our kids what her pacemaker does and how it works,” said Kristina. “We all live near each other and Emma loves going to her house, seeing her cats, and playing in the yard. Susan always makes sure to have her favorite snacks, and toys for her to play with.”

This past year, Susan was also diagnosed with aortic stenosis, a fairly common condition among older adults. While Emma needed to have her pulmonary valve replaced, Susan needed a new aortic valve. This valve is responsible for blood flow between the heart and the aorta, the body’s largest artery.

“Stenosis happens as the aortic valve stiffens over time,” said M Health Fairview Interventional Cardiologist Marit Thorsgard, MD, FACC. Thorsgard replaced Susan’s aortic valve earlier this summer at the M Health Fairview Southdale Hospital Vascular Health Center.

While they needed to have different valves replaced, both Susan and Emma were able to have them implanted through a catheter inserted through the groin. Called a transcatheter valve replacement, this method is a recent alternative to open-heart surgery. Patients are mildly sedated, instead of receiving general anesthesia, and typically only stay one night in the hospital for monitoring.

“Four days later, my partner and I went dancing,” said Susan. “We’re old, but we love to dance.”

New data leads to non-surgical approach for several conditions

Transcatheter aortic valve replacement (TAVR) – the specific procedure Susan had – was approved for higher-risk patients in 2012. As more data was collected about its efficacy and safety, it was approved for use in all patients. After TAVR was approved, the same device could be used on a trial basis as a pulmonary valve replacement – which is what Emma needed.

“After any artificial valve is approved, you can potentially use it off-label in patients in another position,” said M Health Fairview Pediatric Cardiologist Varun Aggarwal, MD. “Based on data from this off-label use, the U.S. Food and Drug Administration recently approved the transcatheter approach for pulmonary valve replacement.”

Each artificial valve can last on average 15 years before it needs to be replaced again. Because of this, Emma will likely need to have multiple valve replacements throughout her life. With new three-dimensional imaging technology, M Health Fairview cardiologists were able to say with certainly that Emma was a good candidate for a transcatheter pulmonary valve replacement (TPVR).

“Without this new technology, we wouldn’t have been able to say for sure that it was safe to do the transcatheter approach instead of open-heart surgery,” said Aggarwal. “We usually don’t need to perform TPVRs in such small children. Emma was one of the youngest patients we’ve had.”

The fewer times doctors need to replace valves surgically, the better, given the increased risk and scar tissue build-up over time. In older patients, the initial valve can potentially last for the rest of their lives, and they can also be at a higher risk from complications from surgery.

The procedure received FDA approval just under a decade ago, and this summer M Health Fairview hit a major milestone when our care teams conducted our 1,000^th TAVR procedure.