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."