HOUSTON—The tragic, sudden death of a young father may serve as his final gift to his twin daughters, alerting doctors to a rare medical condition that could claim the girls’ lives, too.
"We got married on July 24th of 2004," said Kristin Wallis, in an emotional conversation about her late husband and the rare syndrome that took his life.
After they married, Kristin and Tyson Wallis struggled for several years to have children. Fertility treatments—including in-vitro fertilization—finally worked in 2010. They were ecstatic.
"My husband had brought a camera and a video camera and he was going to video it," she said of their trip to the doctor to view their first sonogram and to listen to the heartbeat. "And he dropped both of them when we heard the heartbeat. He just couldn’t stop crying."
The twin girls – Olivia and Eleanor—arrived premature at 33 weeks, but they appeared healthy and normal, and the Wallis’ long-awaited family was finally in place.
"It was the best moment of my life," said Kristin. "And he [Tyson] just kept whispering, ‘We’re finally a family, we’re finally a family. It’s so perfect.’"
"I’ll never forget the look on his face. He kept saying ‘I finally have everything I’ve ever wanted.’ It was just so perfect. It was really perfect. It was a great day," she said.
But those great days would only last another 10 months.
On January 18, 2012, Tyson and Kristin shared a kiss and said they loved each other as she rushed off to work. She told him to enjoy his day with the girls. He said he always did. It was 9:17 a.m. The frantic phone call came just as Kristin pulled into her work parking lot.
"Nobody would tell me what was going on," she said of the scene she found when she rushed back home. "They just said he wasn’t breathing, that he collapsed."
"They put me in a room [at the hospital] and a doctor came in and said that he didn’t make it. And that was it."
Tyson Wallis was only 30 years old. His heart ruptured. There was nothing doctors could do.
"I never in a million years ever imagined that I would be 30 years old and not have my husband. He was my whole world. And we were so happy. And we finally had our family. And out of the blue, my entire world fell apart," Kristin said. "He didn’t have heartburn. He didn’t have heart or chest pains. He didn’t have anything. He was perfect. He was fine. He was fine that morning."
"It’s a really silent killer," said pediatric cardiologist Dr. Shannon Rivenes at Texas Children’s Hospital. "And you can have no clue that you have a problem."
The rare disorder that took Tyson’s life is called Loeys-Dietz Syndrome. The silent killer enlarges the aorta, tangles smaller blood vessels and can lead to strokes and sudden death. Tyson suffered a rupture or dissection of an ascending aortic aneurysm. The disorder stretches and weakens the aortic wall until it can’t stretch anymore. Tyson never knew he had Loeys-Dietz.
"It’s incredibly rare, with only a few hundred people who have been diagnosed," Rivenes said.
"It’s something that we could have prevented," said Kristin. "If we had known about it, they would have done surgery on my husband. And he could still be here. My daughters would still have their father. And I would still have my husband."
But while Kristin still has her daughters, Tyson’s heart problem was genetic. The girls were tested. As it turns out, both Olivia and Eleanor have Loeys-Dietz Syndrome, too. They were diagnosed shortly after their first birthday, two months after their dad’s death.
"The concern is that they will have an aneurysm that dissects and they will rupture their aorta at a young age, like in their 20’s and 30’s, which is exactly what happened with their dad," said Rivenes.
But Kristin Wallis says this is where her husband’s story offers at least a glimmer of hope. Her husband’s tragic death—alerting doctors to the genetic disorder—gives her girls a fighting chance.
"If this had to happen, maybe this is how we found out that we’re going to save my daughters’ lives. Because we never would have known about it," she said. "I would never sacrifice my husband for my daughters, but he did save their lives."
Eleanor and Olivia were diagnosed by Dr. Rivenes at Texas Children’s Hospital. She also serves as an assistant professor at the Baylor College of Medicine. She now has the twins on a regimen of medications aimed at slowing the enlargement of the aorta. Open heart surgery is likely, too. But now, the girls can at least be monitored and studied, and the timing of that heart surgery can be planned well in advance of a serious complication.
"And it’s been encouraging actually, it really is," said Rivenes. "So hopefully, we can slow the progression of any of this. What we could have been done for him [Tyson] is what we’re doing for the girls."
The blessing and the curse for Eleanor and Olivia, is that they will always have their daddy’s heart. But now, doctors also have his warning as his last gift to his little girls.
"I will do whatever I can to honor my husband and his legacy, which is them. When I look at [Olivia and Eleanor], I see him. They look like him. They smile like him. They act like him. They are his little children," said Kristin.
"I may not get to be his wife anymore, but I still get to be the mother of his children. And if I get that honor I will do the very best I can to make him proud of me."
"He gave me these children, and I’m going to raise them knowing that their father loved them—and their Heavenly Father loves them even more—and that he’s watching out for them. And that he is taking care of them. And I choose to believe that."
… A belief that could help keep two daddy’s girls alive.
If you would like more information about Loeys-Dietz Syndrome or to donate to the Loeys-Dietz Syndrome Foundation, click here.
To follow Olivia and Eleanor’s journey as they move ahead with their treatment, click here for Kristin’s blog.