My 5-year-old sees a child with severe disabilities and notices…

Gabriel started aqua therapy this month. He gets to spend 45 minutes with a physical therapist once a week at a swimming pool. The exercises are meant to promote motor planning and coordination, things like “hold your body straight, face down, while blowing bubbles and rotating your arms.” Not exactly swimming lessons, but probably this will give him a boost in those, which he’s taking at a different pool.

The other children who come to these lessons are impressive. Most of them show up in electric wheelchairs that have head-support braces. Some of them require two therapists to take them around the pool. They kick, move their arms and pick up objects in the water and move them. They don’t talk much, but they do have huge smiles.

The staff never tell me the names of their conditions or their treatment plans (HIPPA) but watching them I am very aware that this could have just as easily been us. Gabriel, being born at 22 weeks and 6 days of gestation, was at high risk for these disabilities, or “severe to profound neurodevelopmental impairment” as the statistics chart explained to us. (He was also at high risk of dying in the first few days of life.) The doctors explained that 22 weeks was way too early and 23 weeks was also probably too early, and because of the high chances of suffering or disability, it would be better to “let him go.”

Gabriel proved them wrong, and we got out of the hospital with only minor problems — developmental delays, and feeding delays that required a feeding tube to be surgically installed. He still has the tube, which is a small plastic plug that comes out of his skin.

I sometimes feel a little uncomfortable at the pool with the kids who obviously have so much more need, but the therapists assured me that Gabriel is indeed in need of the physical therapy and would benefit from it. I’ve also wondered how Gabriel views the other kids. Last week, as I was drying Gabriel off, I got a sample of how he understands things. Another boy, a year younger than him, was being lifted out of the pool by two therapists and being dried off. They put him in to the wheelchair and stabilized his head. Gabriel said to me, “He has-”

I braced myself, wondering if I needed to stop my son from saying something inappropriate.

“He has-” he repeated, restarting the sentence several times, as kindergartners often will. Would I have to explain what a disability is? What the wheelchair is for?

“He has-”

“Yes?”

“He has a stomach tube, too.”

Wow, I thought, that’s the one thing I hadn’t noticed about the other boy.

“That’s right, Gabriel, you both have stomach tubes.” It warmed my heart that he looked for the thing they had in common. Hopefully judgmental thoughts will take a few more years yet to arrive.

The Umbrella Man: How PTSD will bog you down with Too Much Information

One of the things that PTSD will do to you is make you think that since this life-changing event occurred, everything surrounding it must be significant.

Writing a book, on the other hand, is the opposite. A memoir, which is supposed to be structured like a novel that really happened, is about how the main character changes in response to the life-changing event. Thus, only events that support the changed person at the end can be in the book. In a memoir, the main character is you, so the process of cutting the stuff that doesn’t support the plot is especially difficult as you’re removing some of the most important days of your life.

What you don’t realize is that you’re afflicted with a condition known as Too Much Information, something that can bog down investigators when they’re trying to solve a crime. To give an example of what I mean, I’m going to include a short video at the end that the New York Times made about one aspect of the Kennedy assassination: The Umbrella Man.

To summarize, on the day that Kennedy was killed, it had been raining the night before, but the sky had cleared up by morning. The photographs of the crowds surrounding the motorcade route have no one wearing a raincoat or holding an umbrella. But, in the pictures that were taken by bystanders at the moment the gunshots rang out, there was one man holding an umbrella on the sidewalk near the president’s limousine. It must mean something, right?

I’m talking about the Kennedy assassination and PTSD because if there’s one day in our history when America got PTSD, that’s it. No event has created more conspiracy theories by people unable to tell the difference between a significant fact and an insignificant one. In 1976, 81 percent of Americans thought that Kennedy had been killed by a conspiracy. One conspiracy theory had The Umbrella Man as an assassin who had a gun concealed in the umbrella.

The Umbrella Man is worth particular attention because it was eventually resolved. The man holding the umbrella came forward and testified to Congress that he had been holding the umbrella as a visual protest of John Kennedy’s father, Joseph Kennedy. When he was ambassador to Britain in 1938-39, he had been cooperating with Neville Chamberlain’s appeasement policies. The umbrella was there to be a symbol of Chamberlain’s umbrella, part of his trademark look.

It was there, so it must be significant, says the PTSD victim. In the case of the preemie memoir I’m writing, called Too Young to Save: Our Premature Baby, My Weakness and God’s Strength, I’ve been through a painful cutting process. Out goes the endocrinologist who made us think Gabriel had congenital adrenal hyperplasia, out goes the part about how reading Coleridge’s “The Rhyme of the Ancient Mariner” gave me comfort and context when we thought we were going to lose him, out goes the parts about trying to explain to co-workers how bizarre the NICU is, and out goes the amazing lady who saw me struggling with Gabriel’s g-tube on a really rainy day at a McDonald’s and spontaneously gave me a one-hundred dollar bill.

On the other hand, this process of focusing the plot does give me the opportunity to convey an emotional message to the reader through the narrative, a message of fatherhood and faith as I got my feet back under my body. Writing this book is an important part of recovery from PTSD – not just to say what happened, but to take command of the Too Much Information and tell a coherent story.

https://static01.nyt.com/video/players/offsite/index.html?videoId=100000001183275

Social context and the decision to resuscitate

While speaking at Seattle Pacific University’s nursing program, a student asked me about social context and the decision to resuscitate. Here’s my answer, with a reference to the excellent preemie memoir This Lovely Life, by Vicki Forman.

How does a new reader say “CPAP”?

Amazing story of a 23-week preemie in Canada

Come-home day vs. birthday for preemie parents

Here’s an e-newsletter I published today on our complicated memories from Gabriel’s birth, but our joyous ones about the day he came home from the hospital.

It’s here on MailChimp!

It’s been five years since baby come-home day!

Preemie parent tries to chat with pregnant woman…

Got my teeth cleaned today. The dental technician appeared to be about 5 months pregnant.

Dental technician: “Your head goes so far up in the chair, it’s hard for me to reach around you without my belly bumping in to you. In a few months, it’ll be even harder for me to reach.”

Me: (pause while brain tries to come up with acceptable response, but they’re all variations on “It must be hard to move when you’re huge.” Also rejected “my wife delivered at 5 months so that wasn’t a problem.” Eventually I think I find something…)

“Too bad they can’t rent you a pair of longer arms when you’re pregnant.”

Best interests and Charlie Gard

When I first heard about the case of Charlie Gard, I thought that it would be something I could write about, having been through a similar situation of being in disagreement with our doctor on the best interests of our child, who would have died without treatment at his birth at 22 weeks and 6 days of gestation. But every time I sit down to type, I lock up, unable to deal with what a fraught case this is.

Briefly summarized, Charlie Gard is a baby who was born a year ago with a rare mitochondrial disease in Britain. He had to be put on a ventilator to survive. His parents sought out a doctor in New York who had an experimental nucleoside treatment that could be used on Charlie, although both the New York doctor and the British doctors agreed that it was unlikely to help. The British doctors did not want to allow Charlie to be transported, and they and the parents went to court, and the courts sided with the doctors. Charlie died about two weeks ago.

I find it really hard to write about this because the case is about someone like our son, who the doctors said shouldn’t be saved. In the past year, I’ve had two people write me whose 22-weekers died after being denied care, so the scariness of the close call has not faded. And yet, in Charlie’s case, the doctors were probably right.

As big of an advocate for parental choice as I am in cases such as these, doctors still must act in the child’s best interest, even if they and the parents cannot agree on what is in the child’s best interest. As I was talking with Dr. Mark Hudak, a neonatologist from Florida with whom I wrote an article on parent-physician partnership this year, he said that in his experience, he’s had parents begging for treatment on a 20-week preemie, and begging for no treatment on a 28-week preemie, and in each case, he had to go against the parents’ wishes, instead looking to the best interests of the child. The 20-week preemie was almost certain to die, and treatment would have been futile, and the 28-week preemie was very likely to live with treatment.

The BBC posted a couple of articles on the topic, “Reality Check: Why Don’t Charlie Gard’s Parents have the final say?” and “Charlie Gard has 10% chance of improvement, US doctor claims.” These articles explain that in the UK, the law falls in between letting doctors and parents have the final say, and that treatment the parents wanted to provide Charlie was highly unlikely to work. In effect, he would have been experimented upon, and that last point is why I think it was probably the right choice to forgo treatment.

As I’ve been reading various articles about the ethical dilemma this case posed, one of the clearest has been “Hard lessons: Learning from the Charlie Gard case,” in the University of Oxford’s “Practical Ethics” blog, in which he points out multiple ways the case could have been sped up (and kept out of court) and ethical concepts of harm could have been clarified.

The story also made me remember a classmate of Gabriel’s when he attended a birth-to-three therapy program. Jackson was his name, and he also had mitochondrial disease. Gabriel was 19 months old, and Jackson was soon to turn 3. While Gabriel was learning how to walk (late), Jackson was there to try exercises to get him to raise his arms and head. Frequently, he cried, but had a gurgling sound to his cry because he couldn’t clear his throat. He, like Gabriel, had an electric pump that fed him through a g-tube. When Gabriel heard him cry, he frequently looked concerned and found toys to bring over to Jackson. One day, as we were leaving the building, a therapist was holding Jackson, and she picked up his arm to wave goodbye to Gabriel, and Gabriel waved back, the first time he’d done so on his own. That wave goodbye was permanent — a couple of weeks later, Jackson died of a respiratory infection.

At our next appointment at the therapy center, I found out about Jackson’s passing, and sat in the car crying for a little while as I knew Gabriel was unlikely to remember his friend. I called my wife on my cell phone and she reminded me that God takes each of us at the time that’s best for our salvation. As much as I want to write about the possibility of miracle babies proving everyone wrong, there does come a point where it’s time to let go.

Returning to NICU friends

This last month has been a poignant one for us as we returned to the NICU where Gabriel spent so much time, Swedish First Hill in Seattle. It was for a reunion put on by the hospital, and it took a very short time for Gabriel to grab on to a NICU neighbor of his (literally the next crib over). I tried to get him to pose with one of his NICU nurses and a respiratory technician who was present at his birth and…

They wouldn’t hold still. This is one of about 12 pics I took while blocking the corridor with my not-small body. 🙂

The neonatologist who is also the director of the NICU was there saying hi to people. I tried to give him a paper copy of my article that I published in The Journal of Pediatrics about how better to approach antenatal counseling, Parent-Physician Partnership at the Edge of Viability, but he said he’d already read it and liked it. (I hope that’s true!)

A few days after the reunion, Gabriel’s great-grandfather died, and we flew to the funeral in Illinois. There, Great-Grandpa Art was buried in a plot that’s about 30 feet away from the grave of another of his eight great-grandchildren, Jace.

Gabriel and his cousins by Jace’s grave.

Jace was born when Gabriel was about a year and a half old with hypoplastic left-heart syndrome, which required a heart transplant. The transplant looked to be successful at first, but a few weeks later, Jace died. We followed Jace’s story closely while he was in the hospital, and this was the first time we visited his grave.

The what-ifs from our own crisis birth experience with Gabriel have never ceased to follow us. Jace’s parents were given the option of aborting when the heart condition was detected in the womb. They were also given the option of foregoing treatment but decided to go forward. We were given similar choices, and we took a chance on life, knowing that it was no small task we were asking of the doctors — and our child.

By the grace of God, we made it out of the NICU with a child who is now an avid reader and getting ready for kindergarten. We can only stand in silence at the thought of what could have happened if things hadn’t gone so well for us.

Gabriel seemed to understand the significance of the funeral of his great-grandfather and of the visit to his cousin’s grave. During the visitation, he put his hand on Great-Grandpa Art’s hands, and he asked multiple times if he was going to be alive again, but seemed willing to accept that his soul was living with Jesus now, but his body would remain in the grave until Jesus raised it up. He also sang along to “memory eternal” with the choir without being asked.

Later, when looking at Jace’s grave, he said, “This is the baby who lived and then died?”

His Grandfather David told him that death is like a cocoon — we’re like caterpillars now, but when we rest in the grave, that’s like a caterpillar in a cocoon, waiting for the Resurrection, when we’ll be like butterflies. At first he did not approve of this at all, whispering in my ear “I don’t want to be a butterfly.” When I asked him what he wanted to be, he said in a serious whisper, “Boy.”

But now he’s concerned he won’t be able to find his mother and me as a butterfly, and keeps telling us, “I’ll be waiting on a plant for you.”