She has heterotaxy, which means many of her internal organs, such as her liver and stomach, are in the wrong places.
From the cnn.com
To improve survival in these children, researchers at Yale School of Medicine sought to identify the genes that cause heterotaxy.
From the sciencedaily.com
The cardiac procedures she needs are risky, and her heterotaxy and holoprosencephaly, though mild, carry a risk of early death, according to doctors.
From the cnn.com
In children with heterotaxy, because the body cannot properly place the organs on the left or right sides, the heart in particular is severely malformed and can lead to severe disease.