A Second Opinion Saves Three Lives at Once

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“All too often,” says Dr. Kay, “doctors aren’t aware that a patient has had a congenital heart defect and diagnose them incorrectly. I’ve seen patients end a pregnancy or have their tubes tied because they were misdiagnosed with a heart issue.”

When she only two weeks old, Alison Buntain of Monrovia, Indiana, underwent surgery to correct a congenital heart condition. The formal diagnosis, ventricular septal defect and coarctation of the aorta “was the same thing Arnold Schwartzenegger had back in the 80’s,” explains Buntain. “I had a heart murmur, occasional palpitations, and blood pressures problems as well,” she adds. “And when I was two I had a liver transplant and the medication I had to take for that compounded my blood pressure issue.”

Even so, says Buntain, now 30, she led a remarkably normal life. Aside from seeing a cardiologist every four to six months, “I was able to play soccer and be a cheerleader until my senior year of high school, when my blood pressure became harder to control,” she says. “The only treatment I’ve needed for that has been medication — and I still have the same liver, twenty-eight years later!”

When she was 23, Buntain married her high school sweetheart. She got pregnant quickly, while she and her husband were living in Camby, Indiana. And although she did develop preeclampsia (abnormally high blood pressure that can be potentially life-threatening) and had to go on bed rest for three weeks, she gave birth to a healthy baby girl.

In the summer of 2014 Buntain became pregnant again, this time with twins. “We lived in Monrovia at that time,” she says, “and I was working for another health network so for insurance reasons I didn’t start my prenatal care at Indiana University Health.” At 13 weeks she began having issues with her heart and her first OB referred her to a maternal fetal medicine doctor because of her past health issues. He diagnosed her with a potentially fatal disorder called Eisenmenger’s syndrome.

According to the National Institutes of Health, this condition “is the most severe form of pulmonary arterial hypertension” — high blood pressure affecting the arteries in the lungs. Based on little more than an external examination, “that doctor recommended I terminate my pregnancy. We’d always known I would have to go on bed rest at some point, since I’d had preeclampsia with the first pregnancy. We’d planned for that,” Buntain recalls. “But then I meet this doctor for the first time and he tells me not only do I have to end my pregnancy but that I should get on the list for a heart-lung transplant.”

Devastated, Buntain and her husband decided to get a second opinion from Frank Schubert, M.D., a maternal fetal medicine specialist at Riley Hospital for Children at  Indiana University Health. “Dr. Schubert did not agree with the diagnosis of Eisenmenger’s and recommended I get in contact with the director of the Adult Congenital Heart Disease Program at Indiana University Health, William Aaron Kay, M.D.

Dr. Kay knew almost immediately Buntain did not have Eisenmenger syndrome. “The symptoms are so distinct,” he says, “that it would have been caught much earlier in her life — obvious things like clubbed fingers and a blue tinge to the fingers and around the mouth.”

An echocardiogram (ultrasound of the heart) confirmed Buntain didn’t have Eisenmenger. “When I got the news, I went out of the room crying. My husband and I were still on edge, though, but Dr. Kay assured us he would work to help me get to full-term with the twins.”

And he almost did. However, six weeks before her due date Buntain went into heart failure. “I had diastolic hardening,” she says. “Where they fixed my heart as a kid was narrowing, causing me to retain excess fluid. The twins were delivered by C-section, I was put on an IV to drain the fluid, began taking a different blood pressure medication, and was restricted to a low sodium diet.”

Even though the twins were preemies, adds Buntain, “They are perfectly healthy. They have no issues at all, no medical history, no congenital defects.” As for her own health, “everything was managed medically. I didn’t have to have any invasive procedures, and when I had heart scans after the pregnancy, my heart was in better condition than before!”

“All too often,” says Dr. Kay, “doctors aren’t aware that a patient has had a congenital heart defect and diagnose them incorrectly. I’ve seen patients end a pregnancy or have their tubes tied because they were misdiagnosed with a heart issue.”

Even though Buntain is now under the care of Dr. Kay (she sees him once a year), she doesn’t plan to have more children. “I would love to, but I don’t think my heart could take it,” she says. “I couldn’t be in a better place than I am right now. I’m blessed with my life.”

Her advice for women in the same boat? “It’s okay to be scared and it’s okay to get a second opinion. Terminating a pregnancy is a life-changing decision and you want to have all the information you need before you make it.”

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