Hand to Hold's Official Blog: Written by Parents for Parents

New Hope for 22-Week Preemies

Our son Gabriel, a day after being born at 22 weeks and 6 days of gestation in 2012. He is under a bilirubin light to help break down toxins in his skin that his liver was too immature to deal with.

Our son Gabriel, a day after being born at 22 weeks and 6 days of gestation in 2012. He is under a bilirubin light to help break down toxins in his skin that his liver was too immature to deal with.

A new set of guidelines has come out for the resuscitation of preemies, and it means a huge deal to families such as ours. It provides more hope that preemies born in the 22nd week can get treatment.

Shortly before our son was born at 22 weeks and 6 days of gestation, the on-call neonatologist told us that they had a rule at the hospital that babies should not be resuscitated before 23 weeks and 0 days. “I don’t recommend that babies should be intubated at this stage because the results are so poor. If you give birth after midnight, I’ll be the one who comes and treats him, but my heart won’t fully be in it.” This caused us considerable stress, wondering “Is he going to show up?” He did, the birth occurred at 11:20 p.m., and he “rounded up” and saved our first and only son.

In the weeks and months after the birth, I kept thinking, “Can he really do that?” That is, refuse to treat a child when the parents want it, knowing that withholding care will result in the child’s death? Some research in to the topic revealed that yes, he can do that — a physician is not required to provide treatment that he or she views as futile.

Not only that, his recommendation was in line with the National Resuscitation Program guidelines that were in effect at that time. The birth was in 2012, and the guidelines from 2010 gave a list of conditions when it was not ethical to resuscitate:

When gestation, birth weight, or congenital anomalies are associated with almost certain early death and when unacceptably high morbidity is likely among the rare survivors, resuscitation is not indicated. Examples include extreme prematurity (gestational age <23 weeks or birth weight <400 g), anencephaly, and some major chromosomal abnormalities, such as trisomy 13 (Class IIb, LOE C).

“Not indicated” is medical-journal speak for “you probably should not do it.” The limit of viability, or the gestational age at which survival is thought to be hopeless has been steadily dropping over the past 50 years as new medical inventions including ventilators, CPAP, and surfactant replacement therapy have each made it possible for a new group of preemies to survive. Before surfactant, the limit was thought to be 28 weeks. When we checked in to the hospital with Miri’s pre-term labor, we were told that 24 weeks was the limit, and 22 weeks was just impossible.

Since 2010, however, a number of new studies have come out showing that 22 weekers have a better chance than previously thought. One found that survival rates in the United States vary wildly based on the willingness of doctors to treat. The overall survival rate of 22-week preemies was 5 percent, but if you focused only on the babies who received treatment, the survival rate increased to 23 percent. A Japanese study found that 36 percent of 22-week preemies survived there, as did 63 percent of 23-week preemies. The Japanese have been routinely resuscitating 22 weekers since the 1990s.

Just last month (October 2015, that is) a new set of guidelines for neonatal resuscitation came out, published jointly by the American Academy of Pediatrics and the American Heart Association with a different statement on the lower limit:

If responsible physicians believe that the baby has no chance for survival, initiation of resuscitation is not an ethical treatment option and should not be offered. Examples include birth at a confirmed gestational age of less than 22 weeks’ gestation and some congenital malformations and chromosomal anomalies.

This moves the “line in the sand” back from 23 weeks and 0 days to 22 weeks and 0 days. I was also glad to see the part about “unacceptably high morbidity among the survivors” dropped. We did not think potential disability was a good reason for the doctors to refuse care.

Additionally, the guidelines put more emphasis on parental choice:

In conditions associated with a high risk of mortality or significant burden of morbidity for the baby, caregivers should allow parents to participate in decisions whether resuscitation is in their baby’s best interest. Examples include birth between 22 and 24 weeks’ gestation and some serious congenital and chromosomal anomalies.

The hospital where Gabriel was born has also since removed its “line in the sand” policy for 23 weeks and 0 days in favor of a more individual approach that looks at more factors than just gestational age, including weight. Our son was 652 grams at birth, which put him in the 97th percentile for size. This helped him survive. A doctor we talked to at a recent visit back to the hospital said that a preemie that age weighing 350 grams would have a much harder time, and the decision over whether to resuscitate the child would probably be different.

These changes mean that parents in our situation of having to decide whether to ask for resuscitation of their micropreemie will still have a heart-wrenching decision to make — do you try to save the child, or do you say that you love your child enough to let him go and not make him go through the painful treatment? It may be that the latter is the better decision. But, for parents who do want to go forward in the 22nd week, this provides important support.

Eric Ruthford About Eric Ruthford

Thomas Eric Ruthford (WA) is the father of one child, Gabriel, who was born at 22 weeks and 6 days of gestation, setting a record for most immature survivor to come out of his NICU, the busiest one in the state. Thomas and his wife, Miri, live in Washington state. Thomas was a newspaper reporter in the late 90s, and is now a non-profit manager. He has also served in the U.S. Peace Corps in Ukraine, teaching English as a foreign language. He is working on a book about Gabriel, and how neonatal care developed. You can find him on Twitter @MicroPreemieDad, or his personal blog.

Comments

  1. Eric, this is great news, and I appreciate your thoughts on the topic! I met a mother in 2012 who was told that if her twins were born before 24 weeks, doctors would not resuscitate. I was horrified, because two other large hospitals that resuscitated in the 22-23 week window were within a 5-minute drive away . (As it turned out, the woman’s twins were born at exactly 24 weeks and were very healthy toddlers when I met her.) With my son, my doctor was off a week on the due date, and I was positive she was wrong. I have wondered about the implications of setting arbitrary guidelines that take no other factors into consideration. What makes one 23-weeker equal another one?! My own experiences in the preemie world have shown me that babies born at 22 weeks and 23 weeks can survive and have a high quality of life; it’s heartbreaking to think that some babies aren’t given that chance at life. Thanks again for your post!

  2. Although it is true that babies at 22-23 weeks gestation can survive, and some with good outcomes, it is impossible to tell which infants will survive and which infants will both survive and have a good outcome. As a physician, it is very difficult to convey the type of complications we are talking about with these infants and very difficult to know what an individual family can and wants to accept. The part that makes it so difficult for me is that some of these families, once they have lived with the struggle of having a child do so poorly, would not do it again, but once the child has ‘made it’ out of the nicu, you can’t undo that. Likewise if you make the decision not to try, you can’t undo that either. You cannot compare US babies to those in Japan, or anywhere else. The Japanese poplulation is very homogenous, ours is not. We know that Asian babies have different outcomes than Caucasian, African American or Native American babies. So to say since Japan has good outcomes ours will also be good if we try, is not accurate and only speculative. It is also important to note that few people would put a loved one at any other age through what we put 22-25 week infants through if the outcomes were known to be similarly poor. In every medical situation, the data we know is really only based on populations of people with similar characteristics or disease processes. So for example, if a person has cancer and the overall cure rate is 50%, that’s interesting and helpful to know, but for the individual patient, the cure is either 0 or 100%. Likewise with extremely preterm infants. Physicians aren’t heartless, we just see a lot of heartache and struggle and want families to understand the risks they’re taking with this difficult decision. It is one of my worst fears that I will give false hope to a family, their child will have a poor outcome, and the parents won’t have seen the poor outcome as even a possibility. Resuscitation of an extremely preterm infant is not a decision I would wish on anyone and it should not be taken lightly.

    • When you’re talking about making sure that the family knows about the intensity of the treatments that the child will endure after birth, that’s informed consent and is a good thing, even if it ends up scaring them. But when you’re talking about refusal to treat because the doctors know better, that’s paternalism, and that’s what nearly did in our son. Moving the “line in the sand” back from 23 weeks to 22 weeks is a good step away from paternalism.

      As for the parents who, after seeing a child come out of the NICU very poorly, wish they had taken the other choice, I have to object rather strongly. This is an odious notion, that we have to take advantage of a “window of death” in which we know our choice will lead to a death in order to prevent the possibility of disability. If you can tell that life support is only serving to prolong the dying process, then withdrawal is appropriate, but in a situation so uncertain as the birth of a preemie, you don’t know that.

      As for the thing about the Japanese babies — while I have heard anecdotally that Asian babies do better than others in the NICU, you don’t get from the 5 percent U.S. survival rate found in the NEJM study published back in May to the 37 percent survival rate found in the 2013 Ishii study just from Asian heritage. Better physicians attitudes, better procedures and better national health care are driving the difference.

Trackbacks

  1. […] Shortly before our son was born at 22 weeks and 6 days of gestation, the on-call neonatologist told us that they had a rule at the hospital that babies should not be resuscitated before 23 weeks and 0 days. “I don’t recommend that babies should be intubated at this stage because the results are so poor. If you give birth after midnight, I’ll be the one who comes and treats him, but my heart won’t fully be in it.” This caused us considerable stress, wondering “Is he going to show up?” He did, the birth occurred at 11:20 p.m., and he “rounded up” and saved our first and only son… [Read the rest on on Preemie Babies 101] […]

  2. […] In the weeks and months after the birth, I kept thinking, “Can he really do that?” That is, refuse to treat a child when the parents want it, knowing that withholding care will result in the child’s death? Some research in to the topic revealed that yes, he can do that — a physician is not required to provide treatment that he or she views as futile… [Read the rest of this post on PreemieBabies101] […]

Speak Your Mind

*