The ACOG patient information page; what should it say about 22, 23, 24 weekers?

I mentioned not so long ago that the web page of the US Obstetricians professional association has information for prospective parents of babies of less than 25 weeks gestation that is… questionable.

They state, for example, the following :

Medical advances have helped some preterm babies survive and overcome health challenges. However, the chances that a baby born extremely early will survive without disability are still small. With very rare exceptions, babies born before 23 weeks of pregnancy do not survive. Although survival rates increase for babies born between 23 weeks and 25 weeks of pregnancy, most survivors face serious, often lifelong disabilities. As gestational age increases, the outlook for preterm babies improves.

That statement is wrong factually: in Japan, with the majority of babies at 22 weeks receiving active intensive care, 50% of them survived in 2010, similar results from Uppsala can be seen with 53% surviving over a 10 year period, 2006-2016. In Iowa over a 10 year period survival at 22 weeks was 64% among babies receiving active intervention (almost all the live births), similar to the data from Cologne. A systematic review of the available data for babies of 22 weeks GA showed that infants receiving “proactive” treatment had an overall survival among published cohorts of 29%; survival was better in the later epoch (2010-2020) at 31% compared to studies from before 2010, 22%. I don’t know what ACOG thinks of as “very rare exceptions” but 1 in 3 babies surviving is hardly very rare. Similarly the statement: “most survivors face serious, often lifelong, disabilities” is factually incorrect. Most survivors have no disability or mild disabilities (for example 70% of survivors in Uppsala, 55% in Iowa), and, as most “disability” is because of low scores on Bayley testing, the proportion with disabilities decreases with time.

Why our Obstetrical Colleagues are so biased against the most immature babies confuses me. You would think that they would be our greatest allies in trying to improve outcomes for the patients we have in common, that they would want to help mothers and their partners to make the best decisions based on accurate information.

What would unbiased information actually look like? I think it should include the following information which is critically important to parents facing the challenge of a potential delivery at <25 weeks.

1. Determination of the exact gestational age is inexact. Remember that if you have an assigned gestational age of 23 weeks and 1 day, for example, you might be at 22 weeks and 3 days or at 23 weeks and 6 days.

2. Threatened extremely preterm delivery often calms down, and many mothers deliver at less frightening gestations.

3. Many factors affect your babies chances if delivery actually happens, more than just the number of weeks: the weight of the baby, whether it is a boy or a girl, a single baby or one of twins, presence of infections, whether you had a chance to get a steroid injection, where you actually deliver the baby. All of these can make a difference between having a very small chance of survival and having a much better chance.

4. In some hospitals babies under 24 weeks, and in others under 23 weeks, are not offered intensive care. Other hospitals have a much more proactive approach. Ask your obstetrician if your hospital has any policies, and any experience, in giving intensive care support to babies at your estimated gestational age.

5. Before 22 weeks best estimate of gestational age there are only very few babies in the whole world who have survived. After 22 weeks estimated gestational age chances improve, and continue to improve with each day. Overall, in a hospital that gives babies at 22 weeks GA a chance, 1 out of 4, to as many as 1 out of 2, babies can survive.

6. Almost always, babies at 22 to 23 weeks gestational age have several complications during their hospital stay, they tend to have infections, feeding problems, lung development problems and many have serious complications.

7. If your baby survives the first 24 -72 hours their chances will improve. Most babies who don’t make it die within that period. However, some who have multiple or very serious complications can get into serious difficulties later and may die after many weeks of intensive care.

8. Babies who survive frequently have challenges during their first years, many have lung problems and hospital visits, or re-admissions, often for lung problems. Some will need surgery, such as for a hernia.  Some will need extra attention from physiotherapists, occupational therapy specialists, and other medical specialists. Almost all have an excellent quality of life, are able to communicate, and enrich the families they are born into.

As I was preparing this post, a highly relevant review article by John Lantos was published (Lantos JD. Ethical issues in treatment of babies born at 22 weeks of gestation. Arch Dis Child. 2021) John points out how strange the response has been to the incredible successes in looking after the most immature babies:

One might expect that such a startling medical breakthrough would stimulate excitement, admiration, emulation and research. Oddly, it seems to have generated none of those things. Instead, key professional societies have either ignored or misrepresented the outcome data.

He suggests that what is holding us back is inertia “Treatment of babies born at 22 weeks of gestation shows very promising results. Parents seem to want such treatment. It is cost-effective. The reticence of many centres to provide such treatment seems to be a result of institutional inertia.”

I am not so sure that is all it is, the bias of obstetrical groups against these babies is strong. I wonder if it is because they sometimes perform terminations at 22 weeks for babies without congenital anomalies, so they would rather believe that they are non-viable. There is also an extremely negative sentiment regarding cesarean delivery at extremely low gestational ages, but I think that the decision to be proactive with care does not mandate that a cesarean delivery be performed. Some centers with good results (like Uppsala) have zero CS at 22 weeks, others do some caesareans. Iowa also reports no C-Sections at 22 weeks, but over 1/3 at 23 weeks. I think like everything else it should be an individualized decision, taking into account, among other things, the mother’s future reproductive plans. A mother who is 40 years old with previous pregnancy losses, and a 20 year old in her first pregnancy will probably have a different balance of risks and benefits.

I do believe that my obstetrical colleagues are working for what they think are the best interests of their patients, and I also think that active intervention at 22 weeks should be a shared decision with the mothers. But, in order to make that shared decision, mothers, and their partners, need accurate information, with realistic predictions of what will be the result of insituting NICU care. The current ACOG website, last reviewed in August 2019, is full of inaccurate information, that was incorrect in 2019, and even more so today.

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research and tagged , . Bookmark the permalink.

7 Responses to The ACOG patient information page; what should it say about 22, 23, 24 weekers?

  1. Brian S. Carter, MD says:

    Keith, it is a bit disheartening to see this seeming avoidance of changing facts. But the facts have changed as you suggest. One obstetrical contribution to marginal success at 22-24 weeks has been a reluctance to provide antenatal steroids (see: Discordance in Antenatal Corticosteroid Use and Resuscitation Following Extremely Preterm Birth. Rysavy MA, et al. in J Pediatrics May 2019, https://pubmed.ncbi.nlm.nih.gov/30738658/) documenting discordance between the provision of antenatal steroids and the provision of resuscitation. The matter of avoiding a C-section at 22-23 weeks is certainly the prerogative of the obstetrician, for the lower cervical segment is underdeveloped and only a classic (vertical) uterine incision would be recommended – leaving the woman to always have to have C-sections in the future, and bear the risks of uterine rupture. Finally, Matt Rysavy and the NICHD-NRN data of late (online ahead of print in J Perinatology from March 23, doi: 10.1038/s41372-021-00999-7) tell us that there is increasing success and less moderate to severe impairment. These latter data may nudge the ACOG to look at their statement about using steroids at <24 weeks in the near future.

    • Thanks, Brian, observational data (always to be mistrusted but sometimes, as in this case, all we have) suggests that the relative benefit of steroids increases as gestational age decreases. With an NNT of only 6 women treated to increase survival by 1 at 23 weeks (Colm Travers article from the Pediatrix database https://www.bmj.com/content/356/bmj.j1039). Using the VON database Ehret et al (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6324435/) showed that the difference in survival between having intensive care following ANS (39%) and NICU without ANS (17.7%) was enormous, the NNT by my calculations being 5. Both of these enormous databases include units with differing baseline outcomes, so the NNT is probably a fairly reasonable reflection of the true effectiveness in general use.
      In other words, one of the most effective of all medical interventions! There aren’t many things we do with an NNT as low as that. Lets hope that ACOG can overcome their inertia.
      As for C-sections at this GA, the actual morbidity of the procedure does seem to be greater than at higher gestations, I have been trying to evaluate this data recently, some of the studies count a classical scar as a morbidity, making it difficult to understand the data. I don’t think the direction of the scar should be considered a morbidity, but rather the things that might follow from that, and my latest trawl through the literate does suggest that PPH is substantially more common, more women needing blood transfusions after a classical. As the studies are usually reported with composite outcomes, I can’t tease out the individual risks. The risks of uterine rupture do appear to be substantially higher in future pregnancies, being about 1% even when there is no trial of labour. As I mentioned, though, many centres with good outcomes have no C-sections reported in the published case series at 22 weeks. If you have decided not to consider cesarean delivery (the OBs tell me they don’t like the term “C-Section” so I’ll try to remember it is “Cesarean delivery” or Caesarean in English spelling), if you have decided against that you have to decide on how to monitor the fetus, and what to do about very high-risk malpresentations. I think a team approach can answer those conundrums and develop delivery plans that are consistent with the mother’s wishes, the baby’s best interests, and the best interest of the mother, in terms of her health.

  2. Keith, glad to see you back to blogging. Just to clarify what I meant by institutional inertia – I think that, in order to have good outcomes for babies born at 22 and 23 weeks, centers need to be prepared for the challenges. They need to transport pregnant women with impending deliveries to tertiary care centers. (This did not happen, for example, for most 22 weekers in the EPICURE study – most were delivered at centers unprepared to care for them.) To offer treatment, and then not be prepared to provide state-of-the-art treatment, is a cruel charade and inevitably becomes a self-fulfilling prophecy. But to be prepared requires overcoming institutional inertia, regionalizing obstetrical care, giving steroids, creating small baby units, having golden hour protocols, etc. I agree with you, though, that part of the reason for institutional inertia is, likely, the dogged resistance of some obstetricians and some neonatologists to preparing to provide optimum treatment for these tiny people.

    • I think I didn’t quite get all that you meant by inertia, you are right it is not just an unwillingness to change, but a lot of system changes, attitude changes, and protocol changes in obstetrics and in neonatology. It is quite a lot of investment for a very small number of patients, but as far as I can see in the literature, centres with a proactive approach to the most immature infants also do better with the 24 and 25 weeks infants also. So the efforts are worthwhile.

  3. Roser Porta says:

    I’ve read this post with special interest, dr Barrington. I’m a senior neonatologist from Barcelona, Catalonia (Spain). I’ve recently moved to a new 3rd level neonatal unit (Hospital Germans Trias i Pujol), and one of my functions is the so-called ‘perinatal coordinator’. As a team, our biggest effort is to change this ‘institutional inertia’ and to approach and unify positions between obstetricians and neonatologists. I’m proud to say that, in less than 6 months, we’ve convinced the obstetricians to consider the administration of antenatal steroids from 22 weeks and to involve neonatologists in the antenatal consultation from the first minutes after the mother’s admission. A lot of work is still to be done, but I totally agree with your point of view. And thanks to John Lantos for your always inspiring papers about ethical issues,periviability and antenatal consultation.

  4. anniejanvier says:

    Amazing post, as always. I think one of the main reasons is that preterm infants are not yet “real people” for many MDs and citizens. In our studies, personhood is often what guided triage decisions: the story of a person, attachment we have, how we react when they die, etc Very sad, but these were even referred to as “replaceable non-persons: you can make another 23 weeker, you cannot make another 7 year old”. To me, they are as precious as any other people.

  5. I think there is truth in that, newborn babies, in general, are undervalued compared to older children, and the ideas surrounding personhood are part of that. Preterm babies even more so, and I think the profoundly immature even more so, with every organ system underdeveloped and their weird, not-quite-human appearance, recognizing them as persons, and giving them the same value as others is difficult for some.

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