Jennifer Allison decided that she would carry her baby, Sky, as far as she wanted to go. Sky was diagnosed at 20 weeks gestation with heterotaxy and right atrial isomerism, a complicated set of birth defects, that gave her a 15-20% chance of surviving the first year of life. Jennifer was told that while Sky was essentially like any other baby in utero, there was a possibility that she would die shortly after birth or need immediate invasive intervention. While Jennifer was given the option to terminate the pregnancy, she wanted to have her baby anyways. "I'm not religious," she says. "It was just the right thing for me. I told her I would carry her as far as she wanted to go."
Sky is now almost five years old and has survived 4 open heart surgeries and two invasive surgeries on her gastrointestinal track, but her future is still uncertain. Because they live in Alaska, the family always needs to travel out of state for these surgeries, so the family is currently waiting to travel for Sky’s forthcoming procedures. Many children with heterotaxy do not survive the toddler years, and each surgery brings its own set of risks.