Who Decides? Life-saving Care for Micro Preemies

May 18, 2015

Kangaroo Care with DadWhen Miri’s water broke at 22 weeks and 6 days of gestation, we knew our child was in extreme danger, and we were trying to cling to some hope he might live. The neonatologist who came to talk to us didn’t help with hope.

“At this stage, I don’t recommend that babies should be intubated just because the results are so poor,” he said to us. “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 be fully in it.”

Wait, what? The doctor can just refuse to provide care and leave the baby to die, even though the family wants to try to save him?

Here is one of the most difficult questions in medicine. At the beginning of May, a study came out in the New England Journal of Medicine that explored the differences in care that 22-week preemies receive depending on the hospital at which they are born. Looking at 24 U.S. hospitals in the Neonatal Research Network, the researchers found that 22 percent of 22-week preemies were provided care, and 23 percent of those who received care survived. In the group of 24 hospitals in the study, four hospitals provided no care to any 22-week preemies, and five hospitals provided it to all of the 22-weekers born there.

Being parents of a 22-weeker, our opinions are quite strongly on the side of saying “Yes, you should provide care! Especially when the parents are asking for it!”

Since the birth, I have been researching how these decisions are made, trying to understand this close call we had, and have learned practices vary widely depending on where you are. For example, in Japan, since the 1990s, babies have been routinely resuscitated in the 22nd week, and they have survival rates in the 30-40 percent range. On the other hand is the Netherlands, where babies are typically not resuscitated unless they get to the 25th week of gestation.

In the United States, there is a set of guidelines created by the American Academy of Pediatrics’ National Resuscitation Committee. It states that in most cases, it is appropriate to resuscitate after 25 weeks, but before 23 weeks or if a child weighs less than 400 grams, resuscitation is “not indicated,” which is doctor-speak for “you shouldn’t do it.” That ghastly “not indicated” category is where our child almost ended up.

When Miri was getting close to having Gabriel, the doctors gave us statistics about survival and survival with disabilities of preemies. They told us that 20 percent survive at this stage, and of those, 30 percent survive without moderate to severe disability. These statistics were the main reason we were advised to let him go. And yet, the thing we had to remember is that the statistics are for groups – our one child might decide to live. To cut him off without giving him a chance to live because of what the statistics said about his future seemed quite cruel. Having a doctor say he was going enforce that decision on us was especially offensive.

But then to add to the complication of the “who gets to decide” question are cases of parents in an opposite situation to ours – they did not want their children to receive care, but the doctors insisted upon it, believing they were acting in the best interests of the child. A 23-weeker born in Texas in 1990 was resuscitated against the parents’ wishes and later developed a brain bleed and became severely disabled. The parents sued the hospital for $60 million for battery for providing the care, and the jury agreed with them. In 2003, the Texas Supreme Court overturned the decision, saying that a court should not hold doctors liable for performing life-saving care. Another case involved the father of a 25-weeker in 1994 in Michigan who asked to be left alone with his son in the NICU, who then disconnected his ventilator, resulting in the baby’s death. He was put on trial for manslaughter, but the jury acquitted him.

I don’t know that there is a perfect solution to this dilemma, but I can say that I wish hospitals would be more flexible about preemies born in the 22nd week, and not talk like they are all terminally ill because of their gestational age, nor should they talk about potential disability as a reason to withhold care. We’ve been through early intervention therapy with our son and been amazed at how he, and the other children and their families, have adapted to disabilities and delays. But to parents in the crisis of preterm labor or another condition leading to a premature birth at the edge of viability, these gloomy statistics sound like prison sentences, and can add to their panic and push them in to giving up.

The article in the New England Journal of Medicine I mentioned above was accompanied by an editorial from a British neonatologist, Dr. Neil Marlow, who wrote, “To give crude data on the survival rate among all such infants, regardless of whether treatment efforts were made, is misleading and helps to make poor survival a self-fulfilling prophecy.” He concluded: “Information on survival, morbidity, and policies regarding active intervention should be available to assist parents in making an informed choice about transfer to a specialist hospital, if feasible, and the level of intervention provided after birth.”

I hope these articles encourage some discussion in the medical community to come up with a better approach for micropreemies at the edge of viability. We know that they cannot all be saved, and maybe even most will die at certain stages, but a window of hope should still be open.