After more than a decade of fertility treatments, 41-year-old Dallas resident Valeria Conshafter finally saw her dreams realized when her daughter Sofia, now 3, was born. Conshafter was filled with joy as she first heard her baby’s raspy cry, but within minutes, that joy was replaced with anxiety when doctors told her that Sofia had a rare and serious birth defect called tracheoesophageal fistula/esophageal atresia, or TEF/EA.
“They told me immediately that Sofia had to have surgery,” Conshafter recalls.
With esophageal atresia, the esophagus ends in a pouch and is not connected to the stomach. This is almost always accompanied by tracheoesophageal fistula, in which the esophagus is attached to the trachea. Babies with TEF/EA have difficulty swallowing, which can cause problems with eating and breathing.
Sofia’s first surgery—to connect her esophagus to her stomach—took place when she was only a day old. After 34 days in the hospital, Conshafter and her husband, Todd, finally got to take their baby home. They were given a list of specialists, believing they would have plenty of time to see them eventually. Then, at only 3 months old, Sofia choked for the first time. “She had just finished feeding, she was crying … and she went blue,” Conshafter says. “I called 911 … but then she just started breathing on her own. So then we’re like, ‘Let’s get that list of doctors. Who do we go see first?’”
After a dozen specialists and just as many surgeries, Sofia is now thriving. She doesn’t look like a sick child; rather, she’s tall for her age, active and has no developmental delays. It’s been a challenge for Conshafter to make people understand that Sofia still has serious medical issues, despite looking so healthy. “There’s always a possibility she might choke,” she says. “It’s something that just comes really quickly, and you don’t know when it’s going to happen.”
Conshafter’s ability to navigate the last few years has depended on her family support, her faith and her maternal instincts. “As a parent you don’t have an option to choose,” she admits. “You just have to … deal with it.”
After staying strong for so many of Sofia’s medical procedures, admittedly, she and her husband both went through phases where their own health suffered—Todd got sick, and she became depressed. Thankfully those dark moments passed. The same determination that got them through tough times with their daughter helped them fight their own battles.
Fortunately, Sofia’s choking episodes have gotten fewer and farther between. She’ll likely have more minor surgeries in the future, but for now she’s doing great. Conshafter is even considering sending her to preschool in the fall, though that kind of leap comes with its own share of concerns.
As with most stay-at-home mothers, Conshafter’s days are devoted to Sofia, though she tries to squeeze in some alone time on the weekends to go shopping or get a massage. “I’m in a transition period with [Sofia] right now. I’m feeling healthier, my husband is better and we have a normal routine that is not just about doctors or sickness. It’s kind of overwhelming at times.”
For herself, Conshafter wants to connect with other parents of TEF/EA babies. Though she’s found an online support group (eatef.org), she one day hopes to find something local. She’s also planning to offer her services to hospitals as a resource for parents of TEF/EA babies, and she’s writing a children’s book for kids with TEF/EA. She knows it will help Sofia understand her medical issues, and hopefully, will also help other children who have experienced similar circumstances.
Conshafter recalls how she and her husband used to talk about seeing the light at the end of the tunnel. “We are at the light right now, she says, “and it’s awesome.”
