Another problem is, it sounds like this was a children’s hospital. If her shunt had been in for many years taking it out is complicated. It sounds like it was just a logistical problem finding an adult doctor and hospital.
Neurosurgeons are… well, arrogant and territorial, so they probably just couldn’t find one willing to touch someone else’s work.
They’re as bad as tattoo artists, I tell ya! ![]()
I hate to ask, but…do children’s hospitals not have care coordinators and a plan for ensuring continuity of care when a patient turns 19? It’s not like it’s an unexpected event…
I know, that really surprised me. I used to work in a pediatric cardiology department in a regular medical center, and our doctors regularly saw adult patients, whether they were formerly-child patients who had grown up, or patients diagnosed as adults as having ‘pediatric’ heart defects (undiagnosed birth defects or ‘childhood illness’ issues like heart damage from rheumatic fever).
I wonder if such a coordination was in fact actually done, but the patient or family didn’t follow up and establish a new physician relationship while she was still okay. I know, that sounds like I’m blaming the patient, but it sure seems more likely than a children’s hospital not having a decent discharge process.
My spouse has experienced problems because of his birth defect and that for many years it was considered a child’s problem because, to be honest, most with it didn’t survive past childhood. When he was adult the kid’s facilities didn’t want to see him and the adult ones didn’t have the expertise. It’s better now that a lot of people with the problem are now surviving well into adulthood.
But yes, there is all too often a sudden discontinuity of care when a patient turns 18 or 21 or whatever.
Some children’s hospitals will care for adults they’ve seen throughout their childhood for special problems, but often they just say, “Go, and sin no more.”
My husband’s aunt had a very complicated and rare congenital heart defect, (Ebstein’s anomaly) that wasn’t discovered until she was an adult. No adult cardiovascular surgeon could correct it and no pediatric cardiac surgeon would touch it. She died in her sleep at age 55.
My dad was diagnosed in his late 40s with damage to one of his heart valves, when his PCP heard it for the first time, from a bout of rheumatic fever in childhood. He’d managed to get admitted to the Army with it (undiagnosed) back in the day when a classmate was excluded due to the same thing. As far as I know, he only saw an adult cardiologist for it, and died in his sleep unexpectedly in his early 50s. This was all years before I worked in the field.
The cardiac surgeon that our pediatric cardiologists referred to would operate on both pediatric and adult patients with heart defects. Again, this was at a regular medical center, not a pediatric hospital.