What's a few days?

On the last day of my week on inpatient Pediatrics, I had the opportunity to spend the afternoon in the Neonatal Intensive Care Unit (NICU). It's the place for very sick babies. Many of them will get better soon; others are there for the long haul. I met an infant who was just there to monitor her breathing for a couple hours after delivery, but I also watched a very impaired premature infant get a chest tube for a collapsed lung and an IV put into her belly button for resuscitation. This is the spectrum. However, what moved me that afternoon was a conversation I got to sit in on with a pregnant mother and the NICU physician. She was a very high risk pregnancy, right at 23 weeks gestation. She had what's called a "placental abruption." In short, this means that the placenta (the baby's connection to mom in the womb) becomes detached from the wall of the uterus. This can cause vaginal bleeding for mom, but it also puts the mother at risk for delivering her baby prematurely. Many of these mothers will have to stay in the hospital until their baby is born. That can be minutes, hours, weeks, or months. In other words, it's a very serious condition, especially at 23 weeks.

The conversation centered around what to do if this baby were born today, tomorrow, next week, or the week thereafter. This is a very important conversation because the older the fetus is, the more likely it will survive. In general, babies born at 22 weeks or earlier have almost no chance of survival, whereas babies born at 25 weeks or later have survival percentages up to 80%, depending on the study (1). So it was important to talk to this mom and find out what she wanted to do if this baby were born right now. What if the baby is born next week? Or the week after? One thing to keep in mind: even if the baby at 25 weeks survives, a majority of these children are likely to be neurologically impaired for the rest of their lives.

It's a difficult dilemma, and I cannot imagine the burden of this decision on the mother. At 22 weeks and prior, it is almost universally the standard of care not to resuscitate the baby if it is born and starts to deteriorate. On the other hand, at 25 weeks and beyond, doing everything possible is the norm (and the NICU doc told me that at Mission in Ashville, this would be the standard of care). But during the 2 weeks in between, the burden mostly falls on the mother. It's these crucial two weeks where there's an ethical gray area. How do you prepare for that?

To give you an idea of how likely a baby is to survive, with or without neurological impairment, you can use this link: NICHD Outcomes Estimator. This has been developed by a subdivision of the National Institutes of Health to calculate percentages based on gestational age, estimated weight, gender, singleton birth, and whether or not they've had the opportunity to receive beneficial steroids. There's a reason that we want babies to get to term, a full 9 months. You can see it with these calculations.

These guidelines are based on our best scientific evidence. But one night you go to sleep at 24 weeks and 6 days gestation, and the next morning the baby is 25 weeks. Now much has changed according to the guidelines, and the decision-making could shift. Has it though? What's a few days? It seems so arbitrary. The infant has a right to life, and a right to mercy. The parents have a right to information, and a right to make decisions on behalf of their child. Life vs. Death. And the possibility of a life of permanent impairment and pain. Is this a life? Sitting in the middle is you, the clinician, trying to provide adequate information, allow autonomy, and keep in mind the best interests of the mother and the infant.

Two weeks. I can't imagine making decisions in those two weeks.

I don't have any answers; I am still trying to figure this out on my own. But I think it is an interesting case-study in ethics. What would you do as a parent? What if suddenly you had to make these decisions? Do you do everything, or do nothing? Or something in the middle. As a guide, here are UpToDate's current recommendations (1):

• Below 22 weeks gestation – Resuscitation is not offered or provided due to the zero or near zero chance of survival.
• 22 0/7 to 22 6/7 weeks of gestation – Resuscitation is offered to parents if there is at least a small chance of survival based on available information (e.g. the NICHD outcome estimator for patients receiving mechanical ventilation) and is then provided only if requested by informed parents.
• 23 0/7 to 23 6/7 weeks of gestation – Resuscitation is offered to parents but provided or withheld based on the preference of informed parents.
• 24 0/7 to 24 6/7 weeks of gestation – Resuscitation is offered to parents and may be provided or withheld based on the preference of informed parents. However, if the newborn is predicted to have greater than 50 percent chance of survival without neurodevelopmental impairment, resuscitation is provided. That likelihood is determined using the NICHD database outcome predictor for patients given mechanical ventilation, and using best obstetrical estimate of gestational age and estimated fetal weight.
• 25 weeks of gestation and higher – Resuscitation is provided.

Thoughts?

1. Ehrenkranz RE, Mercurio MR. Limit of viability. In: UpToDate, Basow, DS (Ed), UpToDate, Waltham, MA, 2011.