Thanks an anonymous commenter, we've found Verna. She's the grandmother of a 26 weekgestation boy named Noah Gabriel Wall. This is his parents first child. It looks like they thought he had anencephaly (which is where there's not much, or nothing above the eyebrows, often the brain isn't even developed), but instead it's been determined he has Meckel-Gruber Syndrome. MGS is often associated with encephaloceles, and in this case with anencephaly. Anencephaly babies have an extremely short life expectancy. Drop in and say hi. She doesn't write tons about it, but you can at least read what she's written. She started talking about the baby in May 2008.