These two parents are some of the bravest heroic people i have ever seen to them.
They effectively condemned thier child to a lifelong misery and suffering.
Already 14 painful operations with no option to live a normal life, ever. Worst part is that her brain is normal so she will suffer just like any other person would with this horrible defect.
She'll be mocked and avoided at school. Adults will stare, other kids will tease her. She'll most likely never end up in a romantic relationship. Her life will be filled with shame and misery, cast out from society. Most people with defects such as that never leave thier homes when they become adults. The pressure of the outside world gets too hard on them.
Many commit suicide later (if they're lucky enough to have ability to do so.)
If my child would be diagnosed with something like that during pregnancy, I'd want to abort it for sure. No question about it.
If the baby grows old enough to be born, it's a horrific tragedy to all parties, mostly to the child itself.