Maythum finally finds answers for midaortic syndrome

Maythum Mehdi was just 5 years old when he told his mother, Batul, that he was having trouble seeing: When he played on the computer, the screen appeared blurry. Right away, Batul — who was then training to be a cardiology nurse — sought medical attention. “I knew that wasn’t a good sign,” she says.

At their local hospital in Minnesota, Maythum was diagnosed with renal artery stenosis, a condition in which one or more of the blood vessels that carry blood to the kidneys becomes narrowed. As a result, his blood pressure was so high that it had caused his vision to blur. His clinicians in Minnesota performed an angioplasty to address the narrowing, which appeared to treat the problem — for a while.

A medical mystery

Within two years, Maythum began developing symptoms again, including headaches and a bloody nose. “I knew something was wrong, but his nephrologist said I was just being an overbearing mom by checking his blood pressure so often,” remembers Batul. But her intuition was correct: Tests revealed that Maythum once again had renal artery stenosis. “We were right back to where we started,” says his mom.

Over the next few years, Maythum was seen at multiple hospitals and underwent various procedures to treat the stenosis and, later, what physicians believed was “minor” narrowing in his aorta, a sign of midaortic syndrome. In this rare but serious condition, part of the aorta (the heart’s largest blood vessel) that runs through the chest and abdomen becomes narrow. This can lead to decreased blood flow in the chest, abdomen, and lower limbs.

Although surgeons elsewhere had performed a renal artery bypass— and then later placed a synthetic patch on his aorta — the effects of these procedures didn’t last. “It seemed like every time Maythum grew, we ran into trouble,” says Batul.

Finally, answers

What’s more, Maythum developed pain when he ate and began losing weight — a potential sign of narrowing in one of the arteries in his gastrointestinal system. “He was taking about 10 medications a day and felt miserable,” says Batul. “We had countless emergency visits and hospital admissions, and he missed a lot of school.”

By the time Maythum was about 17, one of Batul’s coworkers in cardiology recommended that she take him to the Midaortic Syndrome and Renovascular Hypertension Center at Boston Children’s Hospital for a second opinion. Maythum’s nephrologist had seen one of the Center’s co-directors, Dr. Deborah Stein, present at a conference and recommended Boston Children’s as well.

Upon their arrival, the Mehdis immediately noticed a difference. “We finally felt like we weren’t weird or different,” she says. “Instead, the team in Boston told us they had seen other kids like Maythum. We didn’t feel alone anymore.”

A bright future

Maythum’s care team included Dr. Stein, as well as one of the Center’s other co-directors, cardiologist Dr. Diego Porras and surgeon Dr. Khashayar Vakili. Further examination revealed some narrowed areas in Maythum’s arteries, including one leading to his kidney and one in his gut. “When you say a team approach, you really mean it here,” says Batul.

Although it was unclear whether surgery to treat the affected arteries would be effective, Maythum was back to his old self within a year and only needs one medication for his blood pressure. Now 24, he’s a college graduate and loves playing volleyball and hanging out with his family and friends. And the experience has given him hope. “Before we came to Boston, it seemed like we had so much going against us,” he says. “Now I know that every time I think I’ve hit a wall, there could be an answer right around the corner.”   

Learn more about the Midaortic Syndrome and Renovascular Hypertension Center.