I’ve been trying for an hour to figure out how to open this blog post, and I suppose I should just take the personal approach: A few days ago, I went to a talk on post-traumatic stress disorder in preemie parents, and it made me upset, jumpy, prone to sharp responses, confused, and I drove home clenching my jaw. It fried me up pretty good.
This isn’t to complain about the talk that was put on by Seattle Parents of Preemies. The speaker was excellent. That’s the problem.
Allow me to summarize what she talked about: Her name is Julie Wood, a psychotherapist who has been serving these families for several decades. In her time, she has seen the population change from being mostly families who were surprised to discover their babies had rare, life-threatening genetic conditions at birth to being the families of micropreemies. The reason for this switch was that improvements in genetic testing now allow more congenital conditions to be detected in the womb, after which they are usually aborted. (I have strong opinions on this, but that’s for a different day.) The increase in micropreemies has been driven by an improvement in neonatal care, especially the advent of surfactant.
The thing about micropreemie families that is different is that they all started with their child’s life in serious danger of death.
To list off some of the topics she talked about:
PTSD response. There are three basic categories.
- Detachment, feeling like you’re watching a video. You numb out, you don’t feel a thing. You lose the ability to cry when you know you should be crying.
- You have flashbacks / triggers. Often these are sensory-based. Smell is our most primitive sense, and the smell of hospital soap can send them back. Dreams and nightmares, too. But, flashbacks can be the body’s attempt to heal through smaller exposures as time goes on.
- Physiological hypervigilance, including panic attacks, racing heart, scanning the environment, wariness, inability to sleep, and this is really bad for the body.
An example of detachment she gave was a day she was running a support group for mothers who had been through the NICU and had life-threatening disorders, and the women brought their photo albums from the NICU and shared them, which was super cathartic and also triggering everyone in the room, upsetting them with all the reminders. And then the next week, they talked about recipes, and no one said a word about the experience they’d had the previous week. “That’s PTSD,” she said. “Shut down.”
On fathers: Fathers often have a second trauma, wondering if they’re going to lose their partner. The mothers become hyper-focused on the baby, and this difference can be the seeds of problems later on in the marriage. Also, fathers cope with grief very differently. Bad news for me is that their coping mechanisms are not valued in the mental health world. Women talk about it, men engage in action, and this can be the source of conflict between partners.
On mothers, though: Women can engage in avoidance. In one NICU, she asked the nurses about a particular mother and they said, “She’s fine, always cheerful, don’t worry about her,” to which Julie responded, that’s the one I need to talk to. Mothers can say that the baby really does need them 110 percent of the time and get away with it and refuse to take care of themselves.
Divorce rate myth: It’s been said that NICU families have a higher rate of divorce. Julie explained that several studies in recent have shown that this is not the case — it’s either the same as the general population or slightly lower.
In grieving, attend to four things:
- Walking (optional)
Underachieve in all other things.
Risk & resilience for PTSD: Previous trauma will make you be at higher risk for later. Someone who grew up in an abusive home, for example, is at much higher risk for getting PTSD as the result of a traumatic birth.
But endurance is possible. You can endure enormous trauma so long as someone’s with you to talk about it with. Traumatic childhood can be survived this way, especially when that person isn’t someone whom you have to spend a long time explaining the details of what it means to be in the traumatic situation. It’s when we detach and are alone that we get damaged.
The onset of symptoms can be quite delayed. Sometimes it’s because things are ok years later, and then your body finally says it’s ok to feel those feelings and then you get hit by that.
And… as for why I was so amped up by all of this. I’m fine! Nothing’s wrong! Nothing to see here, move along…
But speaking more seriously, most hospitals are not doing anything on the psychological effect on the parents. The nurses might send in the social worker if you start crying uncontrollably for 15 minutes, but there’s not much in the way of screening, treatment, support groups, etc. At Swedish, we had pizza night put on by the March of Dimes every other Thursday, which was a good experience, but probably not enough.
Yeah, both my wife and I probably need to see a counselor on these topics at some point in the future. The president of Parents of Preemies gave me a list of counselors who have some experience in this.