When Miri went in to pre-term labor at 21 weeks and 5 days of gestation, we didn’t feel like there was much hope of getting to a point when our baby could survive. However, we remained in the antepartum unit for eight days until her water broke, at 22 weeks and 6 days of gestation. At that point, a neonatalogist, a doctor who manages the care of premature babies, came to talk to us, and recommended against intervention. “I do not think babies at this stage should be intubated,” he said. “The results are just so poor. If you deliver after midnight tonight, I’ll be the doctor who can do that intubation, but my heart won’t entirely be in it. Twenty three weeks is just the line that we draw.”

He left. That was about 6 p.m., and we got transferred to delivery. Around 10:30 p.m., it became increasingly clear that Miri would deliver that night. The neonatologist showed back up and asked Miri if she wanted him to intubate. She said yes. At 11:20 p.m., he was born, the doctor intubated him and set him up with an assortment of machines, and put Gabriel in to a thing that looked like a plastic spaceship on wheels. (I guess they made an exception because it was so close to midnight.)

We nicknamed this neonatologist “Dr. Grumpypants,” both for his wrong recommendation, and for his mildly sarcastic manner that he kept with the medical staff. He supervised Gabriel’s care a couple more times during his stay and did a good job, but never admitted he was wrong.

Ever since then, we’ve wondered about this question of when one intervenes. A different doctor had come to us before Miri’s water broke, and explained to us that in the 22nd week of gestation, hardly any doctor would intervene to save a baby born at that point, in the 23rd week of gestation, they’ll do it if you ask, in the 24th week of gestation, they’ll try to talk you in to intervening, and after the 25th week, they more or less have to intervene.

The statistics that they told us about indicated that at 24 weeks of gestation, babies get close to a 50-50 chance of survival. At Gabriel’s stage, they were telling us that about 15 to 20 percent survive, and that of those survivors, only 15 to 20 percent live without major neurological problems. This link takes you to a chart that reflects what they were telling us. 

If you want something more complicated, try this calculator explaining various factors on survival.

This experience left us more than a little annoyed with Dr. Grumpypants for telling us not to try, especially when Gabriel’s come out so well (no neurological problems we can see yet). One of the questions I’d like to explore with this blog is that of how they came up with the dividing lines for when they’d be willing to intervene.

When it comes to end-of-life decisions, doctors and families have to think about the question of whether care would help the patient get better, or whether it’s simply prolonging the suffering before death. With premature infants, the question of withholding care is quite different than it is for older patients. With older patients, a doctor can diagnose how ill the patient is and make a recommendation. For example, if you have an elderly relative who’s had a stroke, the doctor can run tests on his brain. If he tells you that your relative is brain dead and has no hope of breathing on his own, then it makes sense to think about turning off the ventilator.

With a premature infant, there’s no good analogy to that example. Gabriel was born perfectly healthy for a baby his gestational age, but his problem was that he was no longer in the womb. Even though he was in great danger of death, it would be a mistake to call him ill. In this case, withholding care would have been about potential problems and potential suffering, not about the actual condition of our son.

For me, there’s been this what-if question that hangs over my head, “What if we’d made the wrong decision about Gabriel?” We’d have never been called to account for the mistake in this life — both state and church would have allowed us to allow nature to take its course.

I never wanted to have this kind of influence over who lives and who dies. I kind of doubt the people in the hospital wanted it, either, but dealing with it is part of their job. If Gabriel had been born a day earlier, the hospital wouldn’t have helped him.

I’d like to know why we do things this way.

Advertisements