A rare diagnosis. A stent lost in the mail. A fairytale ending.

Anne Accardo’s doctor, Gustavo Oderich, describes it as a Cinderella story. Like a glass slipper that could only fit one foot, Oderich – a vascular surgeon at McGovern Medical School at UTHealth Houston, UT Physicians and Memorial Hermann – designed a stent specifically for Accarado.

And just like in the fairy tale, the two went their separate ways, prompting a quest to reunite them. But instead of searching the field for the only young girl the shoe would suit, Accardo’s situation meant finding a custom stent, lost at FedEx in Memphis.

“There was no way it was getting to me on time,” Accardo said.

The New Orleans resident, 46, was awaiting delivery of the stent to Houston.

Once he landed, she would undergo groundbreaking surgery, performed only by 10 surgeons in the United States, including Oderich.

And if that wasn’t enough, Accardo was in town early with his partner Ken Daigle. They wanted to outrun Hurricane Ida, which was heading towards Louisiana just before its operation on August 31. After decades of medical travel, the light at the end of the tunnel began to seem out of reach.

That is, until the manufacturing company Cook Medical assumes the role of fairy godmother and literally turns on the jet engine.

Dr Oderich broke the news: “The stent is on its way. “

Looking for an answer

The story began in 2000 with a menstrual cycle that would not stop.

Accardo was on birth control and had breakthrough bleeding.

“I kept thinking this had to end,” she recalls.

When it wasn’t, Accardo became so weak that her father had to carry her to the car and take her to the emergency room.

“I have been tested for all bleeding disorders,” she added.

Newly married, she was warned by a fertility specialist about the dangers of pregnancy: “When you get pregnant, the arteries in your uterus open about the size of a garden hose. You could bleed to death.

During this time, Accardo continued to visit the hospital regularly to stop the bleeding.

“I was exhausted,” she recalls. “It was like three years from hell.”

In 2003, doctors performed a partial hysterectomy.

But, the removed section of her uterus returned from the pathology with no abnormality, nothing that could have caused – or explained – the bleeding.

The next step was to have her aorta checked. Again, the results were normal.

Accardo still had no answers. But the bleeding mysteriously stopped.

“I moved on with my life,” Accardo said.

Another five years would pass before she landed in the emergency room again.

Back to the hospital

Accardo’s husband, a police officer, died in Katrina. Their house was destroyed by the storm, completely under water. After emptying it, Accardo sold the property and tried to rebuild his life.

In 2008, she found solace in the gym. She enjoyed her new job and even started dating again.

One night at dinner, a severe pain developed in his jaw.

“From that point on, it felt like someone had stuck a knife in my chest,” she said. “I looked at my boyfriend and said, ‘I’m having a heart attack. “

He assured her that she was too young at only 33 years old.

“I was sweating profusely and I was shaking,” Accardo said. “I went to the bathroom and by the time I returned to the table I was pale.”

She went straight to the emergency room.

“They brought me back right away and did all kinds of testing,” Accardo said. “Everything was going back to normal, but I was doubled over in pain. “

Eventually, the cause was discovered – an aortic dissection, a tear in the main artery that is often fatal.

Accardo’s mind immediately turned to John Ritter, who died of aortic dissection.

“I just lost him,” she said. “I had never heard of anyone going through this.”

The cardiovascular surgeon on call that day in New Orleans told her that if he performed the operation there, she would have only a 50 percent chance of survival.

“But if I take you to Houston, you have a 95% chance,” he explained.

Accardo was transported by jet.

“I was on an operating table at 8 am the next morning,” she said.

A diagnosis

This was her first open heart operation, performed by Dr Anthony Estrera, vascular surgeon at McGovern Medical School at UTHealth Houston and UT Physicians and treating surgeon with Memorial Hermann.

Accardo also contacted Dr Dianna Milewicz, director of the division of medical genetics at McGovern Medical School at UTHealth Houston.

“I think it’s Loeys-Dietz,” Milewicz said. Loeys-Dietz syndrome is a genetic disorder of connective tissue that causes aortic enlargement. First identified in 2005, he was still unknown when Accardo began to become a regular at the hospital.

After confirming a blood test, Accardo finally got a response.

“I had my diagnosis,” she said. “I knew my life was going to be very different from now on.”

After the diagnosis, Accardo lost the number of surgeries. She lists a second open heart surgery and subclavian artery repair, among other things.

In 2021, she told Dr Estrera, “Something is wrong. I just know something’s wrong.

He told him about Dr Oderich, who is recognized worldwide for his innovative and minimally invasive endovascular techniques.

The aorta is the largest blood vessel, arching from the heart down to the lower neck, then down to the center of the body and then dividing into the legs. Normally, the aorta is as wide as a quarter, explained Dr Oderich.

As the size increases or expands, an aneurysm forms, leading to weakness in the blood vessel and the risk of rupture. Tearing is also possible, which is known as an aortic dissection.

Patients with genetic diseases, like Loeys-Dietz, are predisposed to aneurysms and dissections, Oderich explained.

Traditionally, most aneurysms and dissections affecting the aorta have been treated with conventional open surgery. The operations required a large incision and the assistance of an artificial heart and lung. A less invasive alternative is endovascular repair, which uses special stents, placed inside the artery using a small incision in the groin.

An innovative technology uses stents constructed with separate side arms, “limbs” or fabric openings, “windows”. This allows for the addition of separate stent parts to continue the blood supply to the organs.

“These aneurysms are not easy to correct and require a lot of planning,” Oderich said. He explained that this technique avoids the need for a large incision, as well as the interruption of blood flow, which accompanies open surgery.

Oderich said some patients can be treated with a standard stent, but many require specific stents for their unique anatomy.

“We can accurately measure the distances between ships and their exact location,” he added. “Then we ask the engineers for a specific shape and length, with branches where we want. “

The operation is performed in hybrid rooms which allow radiographic imaging during the operation.

“We put the stents exactly where we want in the aorta,” said Oderich, who began working on fenestrated stents in 2007 at the Cleveland Clinic. Oderich said. He likens putting it all together to building a ship inside a bottle.

However, most fenestrated and branched stents are not yet commercially available in the United States, although they are widely used in other parts of the world.

Only a few centers nationwide have FDA-approved research protocols for accessing the technology.

Oderich is included on the list. His current research offers these special stents, and he moved to Houston last year, after serving at the Mayo Clinic.

For Accardo, it happened just in time.

The next chapter

“His anatomy was already so distorted” from previous surgeries, Oderich said.

With two arteries supplying his left kidney, instead of the usual one, Accardo was an ideal candidate for a windowed and branched stent.

The procedure finally took place on September 5, just after the Cook jet landed.

“The operation took about two to three hours,” Oderich said. “Immediately after that she woke up.”

Because it was a minimally invasive surgery, Accardo recovered quickly.

“I was hospitalized for four days instead of six weeks,” she said. “The technology available to Dr. Oderich is a game-changer. “

Oderich saw Accardo for a two-month check-up after the operation.

He’s required to follow each of his research patients for five years for the FDA, but he continues to monitor their progress long afterward. He has performed over 700 fenestrated stent implants in total, including 60 since moving to Houston.

“I fell in love with Houston because of its history of cardiovascular surgery,” Oderich said. “I want to help write the next chapter.”

A silver lining

Accardo is never sure what the future holds.

“Will this be my last operation?” I had no idea, “she said.” But I’m hopeful. “

Accardo relies on faith, his family and friends to navigate uncertainty. What helps the most, however, was completely unexpected, Accardo explained.

Due to her genetic diagnosis, she reunited with a child she gave up for adoption at the age of 19.

At first, she kept in touch with the adoptive family, but lost contact when her daughter Mary Ellen was 3 years old.

Loeys-Dietz gave him a reason to try again.

“I had to find her,” Accardo said.

Mary Ellen was screened at age 14.

“My daughter has tested negative,” Accardo said. “No one else in my family has it. It started and ended with me. When I heard the news that it was negative, it was the best day.

The two began to write letters. When Mary Ellen turned 18, she began to communicate with her mother on her own.

At 19, Mary Ellen first met Accardo in person.

“I wouldn’t necessarily have the relationship I have with my daughter if I didn’t have this diagnosis,” Accardo said.

“I would see it all again just to have that connection with her,” she added. “That’s what gets me through – mainly her.”

And that lasting love gives her Cinderella story a fairytale ending.

Lindsay Peyton is a Houston-based freelance writer.

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