When it’s spring break and the 4-year-old wants to go on a train…


Published in Pediatrics! Parents on how to improve antenatal counseling


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The birth of our son five years ago was very, very scary as he was born at 22 weeks and 6 days of gestation, and our stress was made worse by doctors saying that a child younger than 23 weeks of gestation could not be resuscitated. (They rounded up, thank God.) Since then, we have wanted to do something to help other parents who are dropped in to this bizarre situation.

We wrote an article for the Journal of Pediatrics that we hoped would influence doctors’ thinking. Here’s its abstract:

In this article, a father and mother thoughtfully reflect on their experiences surrounding the imminent birth of their son Gabriel at the edge of viability. They suggest that physicians should try to understand the values and motivations that will influence parental decisions before reviewing with them the probability of survival and the most likely range of functional outcomes. A neonatologist not clinically involved in Gabriel’s care recounts new lessons learned and previous lessons validated during this collaboration that can help neonatologists establish stronger partnerships with families. [Full text available here]

The way that this article came about was that we realized that doctors don’t actually read long medical memoirs by parents about miracles and personal growth. In order to influence the medical community, we’d have to learn to speak doctor, and write something in a publication that they actually read. So I wrote an editorial to the Journal of Pediatrics, which is published by the American Academy of Pediatrics, also the organization that created the “23 weeks” rule that in 2012 was in fact the accepted national standard. (This has since been changed to 22 weeks as the minimum.)

The editor of the Journal of Pediatrics was amazingly receptive to the idea. I thought I’d just be dismissed as a parent out of touch with the bigger picture, but the editor did want to do something with the editorial, so he paired me up with a neonatologist, Mark Hudak, chairman of neonatology at the University of Florida-Jacksonville. We talked on the phone a couple of times about our experiences and our perspectives. And he told me that in his experience, he’d had parents beg for resuscitation at 20 weeks, and ask for no resuscitation at 28 weeks, and in both cases, he had to go against the wishes of the parents. (And I’d have to agree with him even though we were almost subjected to the same kind of physician refusal — this is complicated.)

I wrote an article about our experience and our suggestions for improving the process of antenatal counseling, including that physicians should:

  • Seek out the motivations of parents, not just their wishes
  • Say something like “Your child is welcome in our nursery” to parents of a “gray zone” baby. Affirming, but doesn’t introduce bias.
  • Talk about difference between short goodbye and long goodbye and ask parents what they think.
  • Find ways of illustrating lives of impaired preemies rather than just saying something like “severe neurodevelopmental impairment.”

Dr. Hudak then wrote a commentary in which he additionally encouraged physicians to examine their own preconceptions about the edge of viability.

I was so excited when this published! Of all the things I’ve wanted to do for preemies, I think this is the most important.

I don’t know what life the article will have now that it’s been published, but so far, it’s been mentioned by the excellent Keith Barrington, a Canadian neonatologist who is also a preemie parent himself, who runs the blog “Neonatal Research.” If you heard the famous “Radiolab” story on baby Juniper in Florida, Dr. Barrington’s voice is included in it. His commentary on my article appears towards the end of his post.

Please read, share, comment! Thank you!


Preemie parents get PTSD

I’ve been trying for an hour to figure out how tPTSDo 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.

  1. 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.
  2. 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.
  3. 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:

  1. Breathing
  2. Sleeping
  3. Eating
  4. 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.

Micro-review of micropreemie book: Juniper, p.50

As I’ve mentioned before, there is this wonderful new preemie memoir book, Juniper: The Girl Who Was Born Too Soon, by Kelley and Tom French. I’m reading through it and enjoying it greatly. The prose is beautiful and breezy and makes me want to keep reading.

It’s impressive how much time the authors spend on parental backstory, which you wouldn’t think would work as the book is about a baby born at the edge of viability, but it does work very well. The process of getting married was long and arduous for Kelley and Tom — there’s Tom’s divorce, having two girlfriends and eventually moving in with one of them, moving out, wanting to get back together, and lots and lots couples counseling. The narrators alternate chapters with who gets to write, which you also wouldn’t think works, but it does. When Tom is writing about this time in his life with the two girlfriends, he talks about “ashes in his mouth” when he’s lying to one of them, which is a powerful image.

When natural conception doesn’t work for them, they go looking for an egg donor, and rather than go through the catalogs of young women offering their eggs, they go with Jennifer, a younger married friend of theirs, and Kelley develops quite a crush on her. She illustrates this unique relationship wonderfully — not quite a bisexual feeling, but sort of erotic in that they’re going to be sharing a pregnancy. But that’s what good writing is about — making the reader see things they wouldn’t otherwise be able to see.

Next up is the actual pregnancy and preemie birth. We’ll see how that goes soon!

Micro-review of micropreemie book: Juniper

At present I am reading Juniper: The Girl Who Was Born Too Soon. You may remember this story from an amazing Radiolab episode on this preemie birth in Tampa Bay, or perhaps the Tampa Bay Times series itself that inspired said story, and was a finalist for the 2013 Pulitzer Prize in Feature Writing.

The book opens with a searing one-page description of what the baby looked like shortly after birth, and it includes the phrase “shuddering fist of her heart,” which is one of those sharp bits of imagery writers use to convey a shock of something readers have never seen. I read that and thought, “Yeah, that’s exactly what it looks like.”

And then it leaves you there in that awful place to talk about… flirting? Yes, the book then has a chapter written by Kelley about how she wooed Tom years back in the newsroom and was frustrated by his slowness in getting around to actually marrying him. It’s a breezy, enjoyable tale of romance and new beginnings.

I would complain about this, but this is exactly what my developmental editor told me to do. And I was like, “Isn’t that jarring, jumping straight to backstory that is so much less intense than the present action?” And Susan said, “No, you have to introduce the main characters right away.”

So apparently Susan was right and that’s how this memoir genre goes.

That’s the end of the micro-review because that’s as far as I’ve gotten (last week’s snowstorm ate all my adult time as the schools closed for two days). Next is a chapter by Tom, which is an interesting alternating narrator thing that everybody told me not to try. So we’ll see how it works.

Here’s a website the authors are using to promote the book if you want more info.

Paper accepted! But I can’t talk about it…

Acceptance letter!
“As a result of the revisions made in your manuscript, we are pleased to accept your paper for publication in Pediatrics.”
And then it goes on to tell me I can’t tell anyone what’s in the paper until it publishes. This is part of my effort to get doctors to listen better to patients and give micropreemies a chance in which I and a neonatologist argue they should take an approach of [EMBARGOED]

Yeah, really. Here’s the official admonition about not talking about it:

Going forward, please take great care about communicating any specifics found in your article before its publication in Pediatrics, especially to those in the news media or competing journals. Your article is under a strict media embargo until 12:01am Eastern time on the day of early-release online. Please keep all editorial correspondence confidential, and refrain from sharing your article’s content with anyone who is not your collaborator. The American Academy of Pediatrics does send advance information about upcoming articles to members of the news media, who may contact you for interviews prior to the embargo date, but who may not publish stories until the embargo lifts. If the public relations office at your institution is planning its own publicity for your article, they also must honor the embargo. If you or your institution’s public relations staff have any questions about media outreach, please call the AAP Department of Communications at 847-434-7877.