Father's Sudden Death May Save Daughters' Lives

June 28, 2012— -- Tyson Wallis and his wife Kristin had decided on chicken tortilla soup for dinner as she got ready for work on the morning of January 12.

"He told me, 'it's 9:17, you're going to be late,'" Kristin, 30, of Houston, told ABCNews.com. "I told him I loved him as he was feeding our twin girls, and I rushed out the door."

But only a few minutes later, as she was pulling into work, she received a phone call from her mother. Tyson had collapsed at home.

She arrived home to a grisly scene in her kitchen. Paramedics had stormed the house in an attempt to revive and stabilize Tyson.

"It was all a blur," she said. "Thinking back, I don't even know who was holding the babies or what people were saying to me."

Tyson was brought to the emergency room, but doctors said that it was too late and he died soon after he arrived at the hospital.

Tyson, 30, was "perfect and healthy," Wallis said. Rocked and baffled by his death, his family ordered an autopsy, which revealed Tyson had died of an aortic aneurysm.

Concerned that there could be a genetic component to the condition, Kristin Wallis brought her 10-month-old twins, Eleanor and Olivia, to Dr. Shannon Rivenes, a pediatric cardiologist at Texas Children's Hospital, who "put the pieces together" and found the girls had Loeys-Dietz Syndrome, a rare genetic connective tissue disorder that can cause aortic aneurysms. Doctors said Tyson had unknowingly lived with the condition his entire life.

A parent with the condition has a 50 percent chance of passing it down to his child.

"For these twins, the family history of the father's sudden death due to rupture of the aorta was the key to diagnosis," said Dr. Shaine A. Morris, a cardiologist at Texas Children's Heart Center and a colleague of Rivenes. "There are only a handful of genetic disorders that can result aortic rupture at a young age. Each disorder is usually associated with certain features."

The syndrome can have a variety of distinctive physical features, according to Dr. Harry Dietz, a professor of pediatric cardiology at the Johns Hopkins University School of Medicine for whom half the syndrome is named.

Cranial facial features, including widely spaced eyes, a cleft palate and a small and receding chin; skeletal features, like a skull that has fused too early and does not allow proper brain growth, and translucent skin and abnormal scarring, all are signs of the condition, according to Dietz.

But Dietz said there is still a lot to learn about the condition, since it was only officially defined and described seven years ago. The condition ranges greatly in severity.

"We've seen people in their 60s and 70s who have had a good quality of life, but people who have made themselves known early in the process tend to have the most severe form of the condition," he said.

"The most important finding in this discovery is the predisposition to blood vessel enlargement," said Dietz. "That is what causes the early death in these patients."

Researchers have learned a great deal on what triggers the abnormal blood vessel behavior, Dietz said. Medications that lower blood pressure have shown promise in delaying aneurysms. New treatments and interventions are being tested, and Dietz said he and colleagues are hopeful for the future.

"The new guidelines we've put in place, along with new medications might be remarkably protective, and might allow these children to live a pretty normal life," said Dietz.

The current standard of care is to monitor the size of the aorta, but new research has demonstrated that determining how tortuous or "bendy" some arteries are can also help doctors predict outcome in these patients, Morris said.

Anyone who has had a close relative who died suddenly or needed heart surgery (especially as a child or young adult) should talk to their primary care physician about a referral to a cardiologist for further evaluation, experts said.

"I wish that people who had aneurysm in their family would take it upon themselves to be tested," said Wallis. "People need to know aneurysms are a silent killer."

Babies Eleanor and Olivia will likely need heart surgery in the future, but have the potential to live fairly normal childhoods, experts said.

"Given that, it is very important that this was diagnosed early," said Morris. "This allows the aortic growth to be monitored very carefully. When the aorta becomes a size that rupture is a significant risk, they will need surgery to replace the aorta, and hopefully will avoid rupture."

The babies will be limited to certain activities, including contact sports, and excessive exercise that significantly increases the blood pressure, like weightlifting or gymnastics, experts said.

As for Wallis, the mom of two little ones plans to advocate for her babies and push for new treatments for Loeys-Dietz Syndrome in every way she knows how.

"I'm not a very vocal or pushy person," said Wallis. "But if I have to go outside of my comfort zone to raise awareness to find a cure or new medications or treatment, I will. My husband was my entire world and the best person I ever met. I'm just trying to honor him and protect my girls in the best way I know how."