March for babies!

March for babies

A few days ago, we went to the March for Babies in Seattle! Here we have two pictures showing why preemie is care is important — Mommy and Gabriel holding hands.

Daddy and Gabriel on FourthGabriel and Daddy on Fourth Avenue in Seattle.

Fire truck on MercerA fire truck on Mercer Avenue. Gabriel loves fire trucks, but feels obligated to cover his ears when he sees them just in case their sirens turn on.

Mommy and Gabriel on FourthMommy and Gabriel on Fourth Avenue.

Mommy and Gabriel by bellAnd Gabriel by an historic bell in front of a fire station along the parade route.

Artificial womb and micropreemie care

PreemieBabies101, the leading blog for preemie parents, has picked up one of my blog posts! Here’s the first couple paragraphs, followed by a link:

An artificial womb that has been tested on fetal lambs has gotten quite a bit of attention in the past week. (The end of April 2017, that is.) Researchers at Children’s Hospital of Philadelphia have used the device on eight fetal lambs and found that they have grown relatively normally for a month in the artificial womb.

Articles also have gotten around on social media, with quite a few people posting their reactions. My news feed has people raising medical and ethical questions as well as saying this is creepy like “A Brave New World” or “The Matrix.” [Read the rest on PreemieBabies101]

lamb in ECMO

Microreview of Micropreemie book: Juniper

Alas, the library won’t give me any more extensions with Juniper: The girl who was born too soon, a preemie-parent memoir that came out in the past year. So I guess I have to wrap up my little micro-reviews of the book, which were previously here and here.

This book is an emotional roller-coaster that deftly describes the in-between zone of the NICU when you’re a parent wondering if your child will live, wondering if you did the right thing by trying to save her. The majority of the book is spent in the first two months of Juniper’s life, when she got necrotizing enterocolitis, a blood clot in her heart, and chylothorax, a condition I’d never heard of that involved mysterious fluid in the lungs.

The book follows a format in which the parents switch off writing a chapter, a format which you would think would be really annoying but it actually works pretty well. It brings together the altering coping mechanisms, how one parent would be miserable while the other would be in denial, and there would also be an occasional reference to marital counseling, which makes me wonder if they didn’t learn this technique in marital counseling before the baby was born as a way to make sure both spouses stories could be fully told.

The book’s style is one to keep the reader moving quickly, with a dramatic summary sentence at the beginning of each chapter, “She had survived a week,” or “The honeymoon was such a distant memory that it no longer seemed real,” and “The NICU was swallowing me.” And most of them end with a punchy emotion, too, “As soon as the words left my mouth, I wanted to yank them back.”

The memoir genre imitates novels and competes with them, too, so it only makes sense that this book would be acting like an action novel or a medical drama. And yet, there were times that I felt like some slowness would have been called for since the parents were stuck in that room for so long and looking forward to a long, different life as a result of what was happening. Another preemie-parent memoir, This Lovely Life, by Vicki Forman, does engage in this emotional richness, opening with three devastating pages on what grief will do to you. This isn’t a major problem, it’s just that Juniper is more about the action than about the emotion. (It does bear pointing out that Vicki Forman is a creative writing professor, while the Frenches are both journalism instructors, and their respective trainings certainly leak through in to their books.)

In sum, Juniper is a great book. In the microgenre of micropreemie parent books, I’d say it’s the best one to come out in the past 10 years, even better than Half Baked, by Alexa Stevenson.

Published in Pediatrics! Parents on how to improve antenatal counseling

 

D32_4583_web (2)

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.