22-weekers - what is right / reasonable / wrong, and what is the path ahead?

[Stefan Johansson]

I wanted to start a discussion about infants born at 22 completed weeks (i.e. 22+0 -- 22+6).

Swedish Television recently broadcasted two programs about "the Miracle Kids", an investigative journalistic approach. We do have a national guideline in Sweden, advocating that neonatal intensive care can be considered at this gestational age (here in Swedish, Google translate will help to get this in your local language). The take-home message from this coverage by Swedish Television are that 1) most 22-weekers are offered intensive care, 2) mortality is high still and adverse longer-term outcomes are very common in survivors, and 3) the societal support for those families after NICU discharge (even in Sweden!) is poor.

Here are the episodes #1 and #2, but in Swedish. I have suggested Swe Television that they offer English subtitles, but yet not. Maybe some smart AI or translation service can help!

Today another interesting paper surfaced on my radar, US data from VON, reporting mortality, and discharge with/without complicartions and tech dependency. The Figure below from the paper gives a good summary.

It would be very interesting to hear your experiences and reflections about the difficult questions around 22-weekers. The tv-programs have sparkled a lot of professional discussion in Sweden, and the need for structural followup and societal support etc.

But I think there are Big Elephants in the (delivery) room is really, what are the right, reasonable and wrong strategies around 22-week deliveries.

Before I share my own thoughts, would be great to hear from you!

[Gustaf Lernfelt]

I was rather surprised of the results presented in this paper form Japan the other day: 

https://www.nature.com/articles/s41372-024-02093-0

While there is a small group and it has only been a two year follow up, the results are also showing better outcomes than expected for the group.

[Mari Ohnstad]

I would like to share a perspective that Professor Emeritus Thor Willy Ruud Hansen and I recently published in Dagens Medisin, a Norwegian medical journal. Given the relevance to this forum, I have translated the article from Norwegian to English. Here is our opinion piece:  

Treatment of Extremely Premature Babies Raises Ethical Dilemmas

The treatment of extremely premature babies raises ethical dilemmas that challenge us as healthcare professionals, parents, and society. The debate surrounding life-saving treatment is marked by strong opinions and judgments. It is essential to consider the broad ethical, value-based, and legal perspectives that underpin these decisions, not just the medical ones.

Treatment of Immature Newborns

Extremely premature babies face significant challenges. Without intensive care, very few will survive. The treatment supports functions in immature organ systems such as the lungs, heart, immune system, and digestion. This requires advanced medical care for several weeks. The question of where the limits lie and who has the right to treatment is continuously debated, both nationally and internationally. In Norway, gestational age and the baby's vitality at birth are used as factors in determining whether treatment should be offered. However, both of these are controversial and of limited value. Other factors besides gestational age also influence outcomes—such as the baby's gender, infections, growth, and other pregnancy-related influences, and whether the mother received treatment that promotes the maturation of the baby's lungs.

Ethical Reflection on Multiple Levels

The ethics of treating extremely premature babies operate on multiple levels. The macro level concerns societal priorities and how we value the lives of the premature. Are we using enough resources and providing enough support in communities to follow up on these children after intensive care? The meso level focuses on department culture and shared guidelines—are we a team with a common understanding of treatment goals? The micro level touches on individual values and morals—how does this affect our interactions with patients and their families?

Who Has the Right to Treatment?

Extremely premature babies have the legal right to treatment just like other patient groups. For many other patient groups with poor prognoses, we rarely question whether they should be offered life-saving treatment. The fundamental ethical question then becomes: Why do we think differently about the treatment of extremely premature babies?

Quality of Life and the Value of Human Life

A significant dimension in this debate is the quality of life and perceptions of disabilities. Extremely premature babies are at increased risk for diseases and disabilities. We should not downplay this, but an honest dialogue must also acknowledge the fact that the majority experience normal development or mild-to-moderate disabilities. Perceptions of what disability means in people’s lives can vary greatly between healthcare professionals and both parents and people living with such challenges. Studies show that parents of premature babies with disabilities often view the child's life as valuable, regardless of disability, while healthcare professionals may be more inclined to see severe disability as a significant burden. It is crucial that we as healthcare professionals reflect on our own attitudes and how they may influence the decisions we make on behalf of our patients.

Parents' Role in Decision Making

Shared decision-making means that decisions are made jointly with the parents. This is not just about informing, but also about listening to the parents' values, concerns, and hopes for their child. For many parents, the period of illness for their child is marked by shock, uncertainty, and fear for the future. How we as healthcare professionals present information about survival and risk can influence their choices. It is our duty to provide a balanced presentation and support parents in their decisions. Difficult choices often involve values just as much as medical facts.

Prioritization and Use of Resources

Extremely premature babies require extensive medical support, which entails significant costs for both hospitals and society. Some argue that intensive care for these babies is too expensive and not cost-effective. However, as a society (Norway), we spend much larger resources on treating people at the other end of the life cycle without questioning cost-effectiveness to the same degree. Perhaps we should instead ask what the human costs are of not giving these babies a chance at life? And how many children who could have had good lives are we "sacrificing" if we decide on a general policy of withholding treatment to spare the minority who survive with disabilities?

The debate on the treatment of extremely premature babies must reflect a broader view of ethics, rights, and societal responsibility. It is about what kind of society we want to be and how we value life, even the most vulnerable. Extremely premature babies deserve the same respect, care, and medical consideration as all other patients. Our task as healthcare professionals is to meet these children and their families with empathy, knowledge, and a willingness to do what is best for each individual patient.

[Stefan Johansson]

Thanks @Mari Ohnstad for sharing this. I fully agree to it all principally, but how are the actuals discussed around 22weekers going in Norway?

I know about the survey among pediatric residents (what they themselves would want in case of a preterm birth) where practically all would go to the forest rather than a hospital in case of a threatening 22w delivery.
https://onlinelibrary.wiley.com/doi/full/10.1111/apa.16631

This commentary is also a good read trying to add some more grey colors to the (at least in Swe) black-white picture. 
https://www.jpeds.com/article/S0022-3476(24)00051-9/fulltext

 

[Kaltirkawi]

The best approach for managing infants born at 22 weeks' gestation is always a loaded subject. However, some compelling evidence suggests that proactive approach may be the way to go. 

A cohort study (https://www.nature.com/articles/s41372-018-0248-y) enrolled infants born at 22 weeks' gestation between 2006 and 2015 in two institutions with different care approaches: proactive vs. selective. The proactive center (Uppsala, Sweden; UUCH) provided comprehensive care to all infants (including antenatal corticosteroids, neonatal resuscitation, and intensive care), while the selective center (Nationwide Children’s Hospital, USA; NCH) initiated or withheld treatment based on physician and family preferences. The results were revealing: infants treated at UUCH had significantly higher in-hospital survival rates than those at NCH (53% vs. 8%; P < 0.01). Among the infants receiving proactive care, survival was higher at UUCH compared to NCH (53% vs. 19%; P < 0.05). The conclusion is clear: even when infants were proactively managed at NCH, their survival was lower than those provided proactive care at UUCH.

A second study (https://doi.org/10.1016/j.jpeds.2019.08.028) enrolled infants born at 22-25 weeks' gestation between 2006 and 2015, reported about the neurodevelopmental outcomes at 18-22 months of corrected age. The results echoed the Japanese experience: survival to hospital discharge was 78% at 22-23 weeks and 89% at 24-25 weeks. Of the survivors born at 22-23 weeks, 64% had no or mild neurodevelopmental impairments (NDIs), and 76% of those born at 24-25 weeks had no or mild NDIs. 

Clearly, a proactive approach has improved both survival-to-discharge rates and intact survival.

[Stefan Johansson]

Interesting podcast about the Tiny Baby Collaborative Team, by the Incubator.

[Nathan Sundgren]

This is such a great blog started and I'm late to the discussion. My journey/ my hospital's journey to offering resuscitation at 22 weeks has been a roller coaster as many new endeavors are. I'll just share some of my thoughts.

As more and more data became available that 22 wk GA could survive, I grew tired of going to prenatal consults where I would say something like, "I'm sorry, but at this GA (22 weeks) your baby cannot survive." It was a lie. But it was also true that our system was not prepared to take care of them and without a concerted system-wide effort, resuscitations here and there would likely not go well. So we made the case to our faculty and our OBs and got the buy in needed to proceed. We developed guide lines as best we could based on the published ones available and that fit best with our system and culture. We implemented these guidelines and started in the beginning of 2023. 

One choice was to use high frequency jet ventilation as our first intention primary ventilation mode for all GAs 22-23 wks. We are a CPAP first center on all babies >/=24 wks and this was a bit of a culture shift. We initially thought we would expect them on the jet for 2-3 weeks and then extubate. But the reality has been much longer averaging somewhere around 6-7 weeks before first extubation attempt. We have learned to be more patient with them rather than pushing to extubate. 

We did join the Tiny Baby collaborative and are working to share data to all learn from each other. But we are also keeping a close eye on our single center data. In our first year of system wide approach, we had 13 babies born at 22 weeks GA. 7 survived. Our IVH rates are reasonable and while we have essentially 100% BPD, the rates of going home on respiratory support are very low. 

You asked right and wrong strategies, here are a few of my thoughts on that:

1. Intubate, surfactant and high frequency vent. I am aware the German NRN uses non-invasive but think for most this will not work

2. Delayed cord clamping - it can still be done. 

3. Right equipment. Right information. We have had to get smaller umbilical lines and get 2.0 ETT. We pushed our pharmacists to know what meds are truly compatible or not with TPN to save extra fluids and line access. 

4. Skin care - I don't know what is right for this, but I know it is the single biggest problem caring for 22 weekers that you never had to think about before. We wean humidity earlier in hopes of earlier keratinization of skin. But it affects many things like the type of ecg leads you use and tape. 

So my experience is simply to say that it can be done. And I agree with Dr. Seuss who said "A person's a person, no matter how small" (Horton Hears a Who).

On 10/11/2024 at 6:01 AM, Mari Ohnstad said:

Perhaps we should instead ask what the human costs are of not giving these babies a chance at life? And how many children who could have had good lives are we "sacrificing" if we decide on a general policy of withholding treatment to spare the minority who survive with disabilities?

This made my day. Thank you Dr. Ohnstad.

[Stefan Johansson]

Some good journalistic work from the UK about all challenging questions around the greyzone of viability:

https://www.theguardian.com/society/2024/nov/19/look-theyre-getting-skin-the-moral-challenge-of-saving-the-worlds-tiniest-babies

 

[Katja]

Thanks for the good topic @Stefan Johansson!
I think we all probably treat them pretty much the same, but small differences may change the game. Therfore I am pretty much interested on how everybody does things? Our approach is: ventilate HFO and don't touch. Do you do it that way too? Do you treat the PDA preventively? What do you do with enemas? Any thoughts on this?  

[Padkaer]

Quite interesting and sober review of preterm treatment at the borders of viability in the Nordics

https://pmc.ncbi.nlm.nih.gov/articles/PMC11076765/

Janicke Sylterns paper describes the Danish approach in details quite precisely. Active care is recommended from week 24, discussed in week 23 (frequently done) and disadviced (but not refused) in week 22.

DNQ recently published a one pager in the Danish medical bulletin concerning survival and neonatal morbidity in DK.

It contains a survival and total number of births graph for the period 2019-2023.
The design is Heidi Cuetos (DNQ epidemiologist) and I think it conveys complex data very precisely.

https://www.rkkp.dk/siteassets/de-kliniske-kvalitetsdatabaser/databaser/nyfodte/op-dansk-kvalitetsdatabase-for-nyfodte-2023.pdf

Numbers matter. If you look at the graph there were 68 liveborn infants GA 23 2019-23 total in DK. That's 14/year or 2-3/year in region Midt (Aarhus University Hospital uptake area). 

>90% of GA in DK are set by ultrasound at the end of first trimester. Same in Norway. I think Sweden is week 18-20? How is it estimated in Japan?