We found that because the complications of Spina Bifida covers so many different medical domains, we’ve had to try to keep the cardiologists, the pulmonologist,

We found that because the complications of Spina Bifida covers so many different medical domains, we’ve had to try to keep the cardiologists, the pulmonologist, the neonatologists, gastroenterologists, and the neurosurgeons AND neurologists on the same page. The closest thing there is to a “Spina Bifida” expert we found was the head neurosurgeon at Washington university in St Louis, a state away from us. After complaining to the head of neurology at our children’s hospital we were able to send her test results and brain scans to him and get a second opinion. He definitely seemed to have insights other doctors didn’t, as well as not bullshitting us when he didn’t know something. He was also careful to point out that because he’d never actually examined her so his opinions were conjecture, not solid infallible facts. My favorite GP I’ve ever had told me “I don’t know, but I will find out”. We’ve really learned to bristle when our daughters doctors present the face of absolute certainty. It gets really tiring when it results in them talking in a really indecisive way and not giving a straight answer. I’m not a medical professional, but I’m a software engineer, I’m not a fool, but getting a doctor to straight talk to you the way an engineer would seems to be a rare event. We’ve had pulmonology suggest a tracheostomy’s multiple times, without discussing the drawbacks of the procedure, and after lots and lots of careful questions, then reasking the question until we get “real” answers about the merits of the procedure it -feels like- the actual reason they want to do it, and the reason children who get a hole in their throat have better results than children without is because once your child is given a trach medical insurance will pay for in home nursing care. Extracting that information was painful and took days of trying to pin down doctors, but it’s really made us feel like the doctors are either incompetent, malicious, or just too busy to care and want us to go away. Even getting them to “prove” she needed a trach via a sleep study was like pulling teeth to get scheduled, the doctors insisted on wanting to do it without the evidence then seemed irritated when the results came back that indicated the trach wouldn’t help her breathing.