it's such a mess, specially because of these paragraphs:
She has a birth defect called holoprosencephaly, where the brain fails to completely divide into distinct hemispheres. She has heterotaxy, which means many of her internal organs, such as her liver and stomach, are in the wrong places. She has at least two spleens, neither of which works properly. Her head is very small, her right ear is misshapen, she has a cleft lip and a cleft palate, and a long list of complex heart defects, among other problems.
Baby S. -- her adoptive parents are comfortable using her first initial -- has a long road in front of her. She's already had one open-heart surgery and surgery on her intestines, and in the next year she'll need one or two more cardiac surgeries in addition to procedures to repair her cleft lip and palate. Later in childhood she'll need surgeries on her jaw and ear and more heart surgeries.
Her adoptive parents, who asked to remain anonymous to protect their family's privacy, know Baby S. might not be with them for long. The cardiac procedures she needs are risky, and her heterotaxy and holoprosencephaly, though mild, carry a risk of early death, according to doctors.
If Baby S. does survive, there's a 50% chance she won't be able to walk, talk or use her hands normally.