Talking Down

When The Boy was in the NICU, the room he was in had 6 babies in it. (They didn’t have private rooms, just areas they could screen off around each incubator. This meant that you got to know the other families, which was great–some of them are still his friends today.) The first couple of weeks, all the kids in his room were boys, and then one day, a girl moved in. I don’t remember her name, but the nurses all joked that The Boy had a girlfriend now. Except, the girl wasn’t like the other kids in The Boy’s room–she screamed a lot.

Preemies don’t scream a ton–if they’re on a ventilator, it’s not physically possible, and if they’re not, they just sleep so much because they’re really busy doing all the growing they would have done in utero, which is a LOT of growing. And it’s much harder work to do it in an incubator than in the womb, so they just need a ton of rest.

But there are lots of reasons why a baby might end up in the NICU besides prematurity. For example, I have a friend whose son was born full-term but with situs inversus, like The Boy has, and they kept him in the NICU for several days after he was born to try to make sure his abdominal organs worked properly and he wasn’t going to need surgery. Babies with birth defects often end up in the NICU. And I know tons of people whose full-term babies had jaundice that required a hospitalization.

And then there’s the drug-addicted kids. The Boy’s Girlfriend was one of those kids, and that’s why she screamed so much. I mean, I’m not an addiction specialist, but I’ve read enough about it to know that detoxing feels pretty shitty. And when babies feel shitty, they scream. Which is why The Boy’s Girlfriend was screaming. How do I know that’s what was going on and it wasn’t some other medical condition that made her feel shitty? Because her mom was clearly, obviously, visibly high when she visited the baby in the NICU. And because the grandma openly discussed it in the family waiting room. After a few days of screaming, The Boy’s Girlfriend stopped screaming, and then she went home with her grandma.

I noticed during our time in the NICU that the staff spoke to the drug-addicted parents differently than they spoke to us. The spoke to us more collegially, more as team mates or peers. Whereas, parents that they didn’t see as stable, the staff tended to speak to in a more didactic style. For example, the doctors and nurses tended to go into more detail when explaining what was going on with The Boy, and they dug deeper into how he was progressing and how it compared to an average 27-weeker.

I get why a NICU team might not throw all the details at a parent who’s clearly high as a kite. I mean, I’ve never used drugs, but I’m betting that a woman who just gave birth and is high is probably not going to be capable of processing all the information that’s available in a NICU. It’s hard enough to understand it all when you aren’t high. But also, I think they felt protective of the kids under their care, and were worried what would happen to them when they left, which has to make it hard connect to parents who were so clearly unstable and might not even be the one raising that child after discharge. With us, who they could tell were going to take good care of The Boy when he went home, they were more open about why they were doing a procedure a certain way, or why the doctor had chosen a certain respiratory intervention, or whatever. They embraced us as partners in his care, and we became friends. And they were very supportive of us–they asked us how we were feeling and just did the things that friends do when they know you’re hurting. I would imagine it’s hard to build that kind of relationship with someone who’s high, and who you know might not even be the one who ends up being the care-giver for that baby after discharge.

I’ve noticed the same didactic style when dealing with some other medical professionals, particularly with specialists who don’t see us as often and don’t have the chance to build a rapport with us. And actually, so have some other preemie moms I’ve spoken to. One of my preemie mom friends told me recently that she had a particularly stressful appointment with a specialist for her son. She left the appointment feeling awful, and threatened–that if her son didn’t improve in a certain area, then the doctor would punish them with a more serious medical intervention. I’m sure the doctor didn’t mean for it to come across that way, but I’ve actually had the same feeling with some doctors myself. It’s as though they blame the parents for the child’s medical conditions, rather than seeing the parents as teammates in trying to help the child thrive.

That “threat” of bigger interventions is actually one of my pet peeves from my time on bed rest before The Boy was born. When one of the NICU docs (the only one without great people skills, as it happened) came to talk to me about what the NICU was like and the statistics on outcomes for preemies, it felt like she was saying “You better keep that baby cooking in there, or else.” But, that presumes I have any control over when  my body goes into labor. Like if I just want it bad enough, I can choose when my baby is born? Uh, no, I can’t. And of course, I wasn’t on hospital bed rest for long before I DID go into labor. And then I got to feel guilty about that too, as though it was somehow my fault that I couldn’t stay on bed rest longer. And we wonder why preemie moms need therapy to get past their feelings of guilt over their child’s birth? It would have helped if that doctor had said “I hope your body cooperates, but we know it might not, and that’s not your fault.”

As if that wasn’t enough to make you feel like crap, one of the worst parts about having a kid in the NICU is not being able to parent them the way other parents can. You can’t just pick up your baby and hold him or her when they’re hooked up to machines and in an incubator. So, a lot of NICU parents don’t feel like “real” parents. And that means that when a NICU staffer talks down to you, or otherwise limits your authority as a parent, it really hurts. My worst memories from the NICU involve the very few nurses who limited our involvement in The Boy’s care. On my darkest PTSD days, that’s the feeling that I re-live, and I find myself thinking of all the things I want to say to them, or rather, scream at them. And when a specialist talks to me that way now, I still feel that “you are not a real parent” feeling. It’s really painful.

If you’re a medical professional and you’re talking to a parent whose child is not well, I hope you’ll think a bit about whether you’re speaking to those parents as partners in that child’s care, the way most of the NICU nurses did with us. If you aren’t, I hope you’ll start. And if you are, I want to say thank you–medical staff like you make it possible for parents like me to get through the tough times with our kids.