I sat, nervous and emotional, in a room of about a dozen hospital administrators and said, “It would help if you started by telling parents like us, ‘Your child is welcome in our nursery.'” They all nodded and I felt like their faces showed I had gotten through to them. “When our son was about to be born, they talked about statistics and outcomes and decisions people make about whether to try to save their baby, which is important, but it would have really helped just to know that you were willing to have him, because there was literally no other choice for us.”
My wife and I were talking to the hospital’s medical ethics committee. I had written them because while Swedish Medical Center did save our son’s life, we were still really unsettled by the near miss we’d had when he was born in 2012 at 22 weeks and 6 days of gestation. I felt like a vulture was sitting on my shoulder, asking, “What if you’d made the wrong choice?”
The wrong choice, in this case, would have been accepting the on-duty neonatologist’s recommendation to not have our son resuscitated, saying he was too immature to survive. He said, “At this stage, I don’t recommend that babies should be intubated just because the results are so poor. If you give birth after midnight — that’s just the line for when we’ll intervene — I’ll be the one who comes and resuscitates the baby, but my heart won’t fully be in it.”
We strongly requested resuscitation, the doctor complied and Gabriel did survive with minimal impairment. In the months after the birth, a question stuck with me: “Can they do that?” Some research revealed, the answer actually was yes, they could. Doctors are not required to provide care they believe is futile, and national standards published in 2010 by the American Academy of Pediatrics said as much. If you scroll down to page 8 of it, you’ll find a list of conditions under which “resuscitation is not indicated,” and gestational age of less than 23 weeks is one of the reasons. “Not indicated,” in medical-policy parlance, means “you probably should not do it.”
I wrote to the ethics committee and told them about our experience, and our strong opinion that this “23 weeks and 0 days” line was a bad thing. They offered to meet with us. One of the doctors who came was a neonatologist who had treated Gabriel during his five-month stay, named Andrew Beckstrom. (He was not the doctor, who shall remain nameless, who provided the less-than-cheery bit of advice cited in the above quote.)
Dr. Beckstrom is a cheerful, younger doctor with curly hair, who started off by saying that if it had been his child, he would have pursued a similar path towards saving him. He explained that the thing they most want out of counseling before a birth is informed consent. That is, they want the parents to know all of their options and the potential consequences of a choice to treat or not treat.
At that point, a human resources manager, a slender middle-aged woman with blond hair, added, “After that, we want the treatment plan that the family wants to be fully supported by the staff, and it sounds like that didn’t happen here.”
Dr. Beckstrom added, “And for that part, I want to apologize.” He went on to talk about the complexity of the situation of the parents about to have a micropreemie — it is also wrong in that moment, he explained, to push parents to get treatment that they do not want for their child. Some parents are looking to be told it is all right to let go. Then, he asked, “What are some things we can say differently to meet the needs of both groups of parents?”
I said that we had felt kind of oppressed by the gloomy statistics, and maybe they could offer them later in the talk, or maybe they could offer the statistics of that hospital rather than the gloomy national statistics.
Dr. Beckstrom smiled and said, “Well, we could say that we have a 100 percent success rate for preemies born in the 22nd week. I say that in jest, but it’s technically true.”
My hand smacked my forehead and I started laughing because he was talking about Gabriel, our son and their record-holder. “OK, I see your point. But maybe you can talk about the statistics later in the conversation and put less emphasis on the part about disabilities. Or, at least do a better job of explaining what ‘moderate to severe neurodevelopmental impairment’ and ‘severe to profound impairment’ means, because they sound like ‘life without parole.’”
Miri jumped in at that point, “And when Gabriel has been tested at his therapy centers, he has gotten in to that ‘moderate impairment’ category a couple of times. ‘Moderate’ means below 70 on the Bayley test, which in our case means a child who might start kindergarten a year late. That’s not a reason to think about letting a child die.”
The physical therapist, a woman with straight brown hair, spoke up for the first time and said, “And we get children and parents with a whole range of experiences. I have had parents of children permanently in a wheelchair and barely responsive who have said, ‘I wish I had known there was another way.’”
“I think,” I responded, “that when a family is wanting to do that, they will probably let you know. I can see other parents saying, ‘I love my child enough to let him go. I love my child enough to not poke holes in him for five months.’ I don’t agree with that, but I think it’s mature thinking. I really felt thrown for a loop when the doctor said that he did not think that care should be given. I mean, after he left, we were wondering whether he was going to show up, and that was stressful, and I said to Miri, ‘I want to try to save him, but I still feel like we have listen to this man. What if we are bringing someone in to this world who is never going to swallow?’ And then I found out there are lots of people who have quality lives who cannot swallow, and- and-” my voice was getting higher and I was losing my composure.
“Eventually our priest talked him in to being fully in favor of resuscitating,” Miri added.
“And I didn’t know what I was really hearing — were we being told this because he really was going to suffer terribly, or was it because people think disabled people shouldn’t be born? I mean, we’ve got friends who have gotten diagnoses of Down syndrome or spinal bifida in the womb, and they’ve been offered an abortion, and I know that two-thirds of Down syndrome babies get aborted in the womb in this country — was he saying this because he had this attitude towards the disabled?”
Dr. Beckstrom talked some more about the new approach they are taking towards making sure they are fully supporting the family’s decision before asking us if we had any other questions.
“Is the ‘line in the sand’ at 23 weeks and 0 days gone?”
“It is,” he said, and explained that they’re going for a more individual approach. A 22-weeker at 652 grams (Gabriel’s weight) would be a good candidate for resuscitation, but a 22-weeker at 350 grams probably would not.
Our former micropreemie, Gabriel, is now 3 1/2 years old and loves to go to model train shows.
With those words, I felt like the vulture had left my shoulder. This is what I had most wanted to happen from the letter that I had written. I had also written a letter to the American Academy of Pediatrics asking them to change their 23-week guideline that they had published in 2010. And, a week before this meeting with the ethics committee, the AAP had made that change, moving the lower limit down to 22 weeks. Babies born at that stage are very rare, and I felt like Gabriel belonged to a community of sorts with other preemies, and now they were a little safer. I know that not all babies at Gabriel’s stage can be saved, and I know that there are some who should, indeed, be allowed to die peacefully. It’s a hard decision for families to make, but I hope it will help if future families can hear “Your child is welcome in our nursery.”