AUSTIN (Nexstar) — Two Central Texas families with similar stories of congenital heart defects are aiming to reach other parents so they can provide support and advice.
Patty Roberts and Elsbeth DeLeon first met over FaceTime nearly two years ago. Both of their husbands had a mutual supervisor who introduced their families after hearing their wives had similar challenges during pregnancy.
“We kind of knew we were going down the same path and it was almost necessary to be friends, but it was never a struggle to connect,” Roberts said.
Roberts’ daughter, Addie, and DeLeon’s daughter, Eloise, were diagnosed with heterotaxy. According to the National Institutes of Health, heterotaxy syndrome “is a condition where the internal organs are abnormally arranged in the chest and abdomen.”
“Individuals with this condition have complex birth defects affecting the heart, lungs, liver, spleen, intestines and other organs,” according to the NIH website.
Addie and Eloise, who are only two months apart, have both undergone open heart surgeries. Prior to their births, both mothers have been each other’s source of support.
“Unless you walk the walk or are going through something similar, it’s really hard to relate,” DeLeon said. “Talking to somebody and having that friend, especially now since the girls are so close in age, it’s really fun that they can have a friend growing up.”
The bond between both families became stronger through triumphs and challenges.
“It can be debilitating, just because I know for me, I’m not a patient person,” DeLeon said. “It’s still hard not knowing what’s going to happen in the next year, the next five years, the next 10 years? It’s just a big waiting game sometimes.”
“What’s next is a constant question,” Roberts said.
When trying to find resources online, DeLeon and Roberts both realized that they yearned for more.
“We looked online for articles and primary sources and things like that and I couldn’t find as much information as I wanted,” DeLeon said.
Eventually, they formed a website, called Heart Families.
“We thought if we found each other, we could find other people that are going to go through the same thing or have gone through the same thing, maybe even find any adults,” Roberts said.
On the website, there are advice videos from parents and stories of children fighting heart defects. Their goal is to build a community where families can ask questions, provide support and share insight from experiences.
“It’s something I wished was around when I was going through this,” DeLeon said. “I wanted to have a place that I could go hear success stories, that I could go read about kids with the same sort of defects as my daughter.”
There are also full stories about each child and the congenital heart defects they have.
“All these kids, they’re just so strong and they just adapt to their situation so well,” Roberts said.
Roberts and DeLeon conduct all the interviews, as well as produce the videos on the websites themselves. They hope families don’t hesitate to reach out with any questions or words of advice.
“We can give that encouragement to parents like, ‘yeah, you’ve got this,’” DeLeon said. “You’re going to be OK. We’re going to help you get information to you to help your journey.”
