Table 3.

Representative quotes: life after NICU discharge: waiting for a shunt malfunction and impact on family life

Waiting for a shunt malfunction

How do I live a normal life without thinking that there’s shunt failure? How do I recognize the symptoms that it’s a shunt failure versus a cold, or he’s just cranky, or he’s gassy, or he’s teething? That’s probably been the most difficult part- when you have a relatively healthy child, when things come up you deal with them. Here, you’re almost like anticipating it. (P1)  She never showed any warning signs of your shunt not working. (Child) does not follow any textbook whatsoever for any of her diagnoses. I also have another mom that I met in the NICU…. If something is going weird with him, she’ll message me. He’s not on a textbook either. We bounce things off each other first before we’re like, “OK, we’re going to ER,” just for comparison, because you don’t really know. (P3)  I always feel that I’m (child)’s voice. I’m the only one who knows when she’s not acting right or something’s going on. (P2)

Impact on family life

Child development  He’s had to go through so many surgeries and just the physical pain, and it stays. That’s given him his own little version of anxiety. When he sees any type of bedding that resembles a medical setting, he just loses it, even if it’s just going to be not invasive at all, even if it’s just the pediatrician (P9).  She is alone more than she’s with people. She isolates herself. She has very low self-confidence…, feeling like she’s different…, she feels like she’s broken. Like she doesn’t work right. She was never invited to birthday parties, so your heart is crushed. It’s really hard for me to watch her not have friends. She can’t be alone all that time. (P8)

Parenting

You become really cautious. Maybe you treat your child like more fragile than they really are. You’re always on guard…. You’ll always have the fact that your child could go into surgery the next day, literally, in the back of your brain. That’s not normal. That’s not normal parenting. You’re highly vigilant…. It’s exhausting. (P10)  Perpetual guilt for her twin brother who’s not experiencing things that I know that he could. I took him hiking for the first time a couple of weeks ago and he told me it was the best day of his life. Why haven’t we taken him hiking before? Because we can’t take her hiking. (P7)

Personal relationships

I’m asked sometimes, what’s the worst part about hydrocephalus? I always say, it is the loneliest condition. Hydrocephalus, there’s no commonality in how you get it, whether it’s genetics, IVH (intraventricular hemorrhage), or a tumor. There’s no commonality on how many revisions you’ll need. There’s no commonality if you have a shunt or not. There’s no commonality on whether you’re going to get a PhD or have an ID (intellectual disability). It’s just lonely. (P7)  I don’t like to spend time away from her. My husband and I have, I think, only been away from our kids one night. It’s hard to leave her alone with other people because I’m always afraid something’s going to happen, like a malfunction. (P6)

Abbreviations: ER, emergency room; NICU, neonatal intensive care unit.

Note: Parent study number is in parentheses.