SAN ANGELO, Texas – When high school freshman John Thoms went in for a routine physical last summer, he was almost in disbelief when doctors told him he had suffered a heart attack.
After further testing, doctors were surprised he was even alive.
Thoms was diagnosed with a rare heart condition called ALCAPA, which is short for anomalous left coronary artery from the pulmonary artery.
It’s a birth defect that claims the lives of most babies during their first year of life if left untreated, according to childrenshospital.org.
Yet Thoms managed to live with it undetected for more than 14 years.
He underwent open-heart surgery in September and his condition is improving. He will find out more about his prognosis in the coming weeks.
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John’s journey with ALCAPA
On Aug. 21, 2019, Thoms saw his pediatrician for a routine physical. That’s when Dr. Jennigale Webb at Shannon Medical Center in Texas heard something that sounded like a heart murmur.
“She said the murmur was fine, but something else was wrong,” said Thoms’ mother, Theresa Mueting.
They performed an electrocardiogram (EKG) to see what the problem was. The test revealed that Thoms had a heart attack.
“That was cause for big alarm. … He’s 14,” Mueting said.
Webb recommended Thoms visit San Antonio Children’s Methodist Hospital to be further evaluated.
His echocardiogram showed he had ALCAPA, a condition in which the left coronary artery originates from the pulmonary artery – instead of the aorta – and carries blood without oxygen to the left side of the heart, according to childrenshospital.org.
“(The doctors) kept saying the tests don’t show anything specific. They had to keep questioning it,” Mueting said. “They said there’s no way he could have this and be this old.”
Dr. David Bush, pediatric cardiologist in San Antonio, said there were many ways to go since the tests didn’t reveal everything.
Bush was conferring with Dell Children’s Medical Center of Central Texas in Austin, where doctors had never seen someone as old as Thoms with this condition, he said.
“In a lot of ways, they were telling us that this doesn’t happen,” Mueting said. “Bush told us he thought he was being fooled by the test, but he thought he knew what he needed to do … and he was right,” Mueting said.
Bush knew something would have to be done quickly.
Thoms went to two more days of school before being pulled out because they couldn’t take the chance of him getting sick before surgery.
On Sept. 4, just 14 days after the routine physical, Thoms was in open-heart surgery.
“We didn’t know it was open-heart until two days before,” Mueting said. “Even when we knew, there were still three different plans going into surgery because we still didn’t know what they were going to find.”
During surgery, doctors finally realized why Thoms’ heart never stopped.
Microscopic arteries had branched off and connected to his heart to give him just enough blood and oxygen to live.
Surgeon John Kupferschmid cut the artery that was attached to Thoms’ lung – along with the microscopic arteries – and put everything back where it was supposed to be.
Kupferschmid was used to working on hearts the size of strawberries since ALCAPA surgery is typically performed on babies.
“His body just found a way. … That’s the only reason he ended up being OK,” Mueting said.
Thoms’ doctors said his EKG indicated a heart attack because he had actively been having a very slow heart attack his entire life.
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“I was less worried than I should have been,” Thoms said. “I don’t think I knew what was going to happen. I thought it couldn’t be true or maybe they got something wrong because you never expect the one-of-a-kind thing to happen to you.”
Mueting was actually in cardiology for six years in Washington as a medical assistant and pacemaker technician, so she had some experience with heart issues.
“It was hard for me to not act scared. He’s my firstborn. You don’t ever want to think about something bad happening,” Mueting said. “You know it’s serious when you have a lot of talented people saying, “What the heck is this?” That’s a bad place to be.”
Mueting said the two weeks between the physical and the surgery “felt like a lifetime.”
Looking back, Mueting said they saw symptoms of ALCAPA when he was born, but thought it was something else.
“John got admitted to the children’s hospital in Seattle when he was 14 months old because they thought he had asthma,” Mueting said. “I thought it was weird because it didn’t run in the family, but they gave him an inhaler anyways.”
Mueting said her son would come home from running the mile at school complaining of chest pain.
“We always assumed it was his asthma,” she said. “Looking back, he was misdiagnosed.”
Thoms said he never felt overly concerned with the chest pain because everything he was feeling was normal to him. He never knew anything else.
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Thoms’ school start date has been pushed back to sometime after January if all goes well.
Until then, he is being home schooled through a San Angelo Independent School District program. Four teachers come to his house during the week.
“They have been amazing; they jumped right in,” Mueting said. “My biggest fear was him being held behind because of something he had no control over.”
On Nov. 12, he will go back to San Antonio for a stress test, during which he will run on a treadmill to see how his heart communicates with his lungs.
“In a lot ways, his heart is learning how to be a different human,” Mueting said. “Best-case scenario, everything turns out great and John will live a long, happy, normal life.”
Mueting said they will have to do a check-up every year to make sure the microscopic arteries don’t try to reconnect to his heart again.
If they do, another surgery will be necessary.
“We won’t know any of this until we see the results of the test,” Mueting said.
Thoms used to play tennis but doesn’t think he’ll go back to any sports.
How you can help
There is a fundraiser for Thoms on Facebook at https://bit.ly/36wIxXj to help cover some of the family’s medical and travel expenses.
There will be a silent auction on the page – including prizes such as local art, free painting classes and restaurant gift cards. The auction will end at 5 p.m. Friday, Nov. 8.
Follow Rosanna Aguilera on Twitter: @AguileraRosanna