Table 2.

Representative quotes: NICU experience: diagnosis and facing the first shunt

Diagnosis: the first conversation

It was puzzling because I’d never heard of it before. That was the first time ever hearing about hydrocephalus, the first time hearing about the shunt being put in his head, all of that. It was foreign talk. (P5)  You know how people explain they’re going to pass out and they get that blackness peripherally that kind of starts moving to the center until they pass out? It felt like cognitively that happened to me…, it was very hard for me to hear past the first part: “This is what it is. There’s no cure. The only treatment is brain surgery.” I just remember feeling pretty overwhelmed, but again at the same time dead and lost…. I remember thinking, was she ever going to be able to live independently, go to school, play sports, go to college, get married? (P8)  I think (the neonatologist) felt like he was being totally transparent, but it just came out in a way that was really negative, and obviously super scary. He shared so many things about just really dire outcomes, both physically and cognitively…, very much information overload. How can a parent process that when they just found out the kid just had a brain bleed? I would say compared with the day he was born so early, I would say that actually was probably the worst day of the whole time. It feels very isolating. (P9)  We were very lucky, because the way that the information was presented was very gentle, very caring but also empowering. They were like “you have some control over her development…, there are things you can do.” It was that hope and potential that still remained that really has still stuck with me. (P6)  I’m not saying cancer isn’t scary, but with cancer, everybody knows where to go, what to do. It’s much more out there. With hydrocephalus, nobody even knows what it is, let alone where to go to get a support group. (P1)

Facing the first shunt

They would do the ultrasounds every Wednesday… You just dread it…. The wait and see was brutal. (P9)  We would watch our baby have a really hard time coming back from all these bradycardia events. We would use the nurses as advocates…it was harder sometimes to convince neurosurgery that something was wrong. You just have to wait for that moment where it’s very clear what’s going wrong. We were not understanding why we were waiting. (P6)  I believe the neurosurgeons are the ones who came up with the plan as far as the shunt to treat. Obviously, we gave consent to do the procedure. (P2)  Why programmable or not programmable? Didn’t even know there was such a thing. Why wasn’t ETV being considered? We didn’t even know what it was. I feel like there were conversations that we didn’t know to be a part of. Then finding out, only through self-education and getting involved, that there were a ton of decisions and conversations, why weren’t we there for real? (P7)

Abbreviations: ETV, endoscopic third ventriculostomy; NICU, neonatal intensive care unit.

Note: Parent study number is in parentheses.