Winnipeg hospital now resuscitating all infants at 22 weeks! A media led case of broken telephone.

I was asked to see a woman carrying a fetus this week who was not yet 21 weeks.  It was to be honest a very unusual consult as she was clearly pre-viable to me and this was only the second time in my career that I had been asked to do so before 22 or 23 weeks.  In the course of our conversation she said the following:

“I know I just have to get to 22 weeks.  Everyone knows that at St. Boniface Hospital they are saving kids at 22 weeks now and they will try to resuscitate mine if I can just get a little longer out of this pregnancy”

You might think I was shocked to hear this but I wasn’t as I had warned a group of health professionals ironically minutes earlier that we were going to start hearing things like this due to misinterpretations of both the medical literature and mainstream media.  When I asked her where she heard this, her response was that everyone at the clinic she goes to are talking about it.  I can only wonder how many other clinics, mom’s groups, Twitter and Facebook posts are saying the same thing!  I spent some time with her and provided her with my view on the topic and we agreed not to do anything for her infant until they were bigger (currently was under 300g) and at least 22 5/7 weeks.  I am not saying I necessarily believe we should strongly go for an infant at 22 5/7 weeks but she is right that we have and if taking in all the information she wants us to try, now that the public is aware how can we not?

Before I go on let me be clear about the actual state in our city at the moment:

WE ARE NOT RECOMMENDING RESUSCITATION OF ALL INFANTS AT 22 WEEKS OR EVEN 23 WEEKS BUT ARE HAVING DISCUSSIONS ABOUT 23 WEEKS

One Article Causes A Great Stir

In late April the New England Journal of Medicine published an article entitled Between-Hospital Variation in Treatment and Outcomes in Extremely Preterm Infants.  What followed were numerous media articles about infants born at 22 or 23 weeks discussing the pros and cons of such actions.  Furthermore an explosion of testimonies from parents who had infants resuscitated with good outcomes at these gestational ages ensued.  Given that this topic was  a hot one and in the public eye, our own local health news agency got in on the action and published the following story called Meet Mac: one of the youngest babies born at St. Boniface Hospital which was reprinted by the Free Press thereby achieving a larger audience.

The family is wonderful, the child simply amazing and much like many of the aforementioned similar stories on Facebook and Twitter inspires people to have hope.  We all want in the end to feel good about things rather than dwell in sorrow so when these stories come along we tend to see them in a favourable light rather than critically analyze what they mean in the context of the greater picture.  In the article they reference, such children as miracle babies and in many respects this is true.  Before I go on I feel the need to point out that I am delighted for Mac’s family and admire their perseverance through many dark days.  There is no question that they are a loving family who will love him for the rest of his life and provide a wonderful nurturing environment.  The concern I have is that they are in the 5% or less of families that have this experience.

If we look at the article referenced above from the United States which is the largest study to date looking at extremely low birth weight infants the findings were that 95% of those infants who people tried to resuscitate at 22 weeks either died or were left with moderate to severe disabilities.  This means 5% survive with only mild or no disability.  It is the 5% we tend to hear about in the media and are the ones that create the buzz.

Looking For National Guidance

The fly in the ointment in all of this is that the Canadian Pediatric Society that provides recommendations in such situations is also under fire for its statement on Counselling and Management of Extremely Preterm Birth.  In this statement in the recommendations section they state: At 22 weeks’ GA, since survival is uncommon, a non-interventional approach is recommended with focus on comfort care. (Strong Recommendation).  In response to this statement a great number of practitioners banded together to write a rebuttal that was published in Pediatrics and Child Health in which they believe that the CPS has created simple rules for complicated decisions as the title of the article suggests.  The gist of the article is that gestational age alone is inaccurate and using other prognostic factors in addition to gestational age is a better way of guiding decisions.  Factors such as estimated weight and certainty of dates for example should come into the picture.  Time will tell how the CPS responds but certainly organizations such as the Canadian Premature Babies Foundation are siding with the authors of the response to the CPS.

Make no mistake, this is a complicated issue and it will not go away anytime soon.  While we are not advocating for 22 week infants to be resuscitated routinely, the fact remains if well informed parents decide they want to try it will be difficult to say no.  Parents need to understand however that for infants to have the best chance, a coordinated approach with Obstetrics and Neonatology is critical to ensure the best chances.  Furthermore seeking the opinion of a Bioethicist would help crystallize some of the issues that I know many are struggling with.  Failure to receive antenatal steroids at 22 or 23 weeks for example is clearly shown in this article to reduce the likelihood of a positive outcome.  Having a face to face discussion between the Neonatologist and Obstetrician and presenting a unified message to the family will be an imperative first step in any discussion.  Furthermore having clear direction in a resuscitation and best practices worked out in the NICU to ensure that skin integrity is maintained is a must.  We have a long road ahead of us before we can truly say that we are offering the best chances to these tiny infants but with collaborative efforts between our members in Neonatology and Obstetrics I believe we can get there.

In the meantime we each need to do our part and use our voices (or writing such as this) send a clear message to the public that while we celebrate with the families who have had such great outcomes at these gestational ages we all too often are mourning the loss of the vast majority who were not so fortunate.

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26 thoughts on “Winnipeg hospital now resuscitating all infants at 22 weeks! A media led case of broken telephone.

    1. I agree – all too often in medicine the justification for intervention is ‘because we can’, rather than ‘because we should’. The cost to the 19 is significant in terms of the discomfort and suffering that being on an intensive care unit entails, and deciding how to balance these dilemmas with families caught up in emotional turmoil is incredibly hard. We are all struggling with the same dilemmas on the other side of the pond…

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  1. As the mother of twins who were born 25 weeks I found this article very interesting and well written. One of my twins was just too fragile and passed away at 12 days. It might surprise some that I don’t believe infants should be resuscitated at 22 weeks. To be honest I just can’t imagine how much smaller and more fragile they are at 22 weeks compared to 25 weeks. As I watched my children battle for life I decided that some thought has to go into the pain and suffering of that child as they are struggling for life and the quality of their life if they do survive. When my neonatologist came to me and said my son was barely gaining weight, they couldn’t oxygenate him and that he would be severely brain damaged and most likely suffer from physical impairments as well, as much as I wanted and still want my son I decided to let him go as I couldn’t stand the thought of him being in pain and suffering his whole life.

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  2. My son was born at 26w + 1d, and died 5.5 months later, still in the NICU. We had a very difficult road that ended in heartbreak, but I know that we made the best decisions for our family, which is a small comfort. When I first arrived at the hospital with preeclampsia, I was at 23w + 2d, and we were faced with difficult choices. I was heavily pressured by an OB not to request intervention for my baby. Unfortunately, she chose to do this by waking me up at 3am when my husband was not with me. This is a decision that needs careful consideration by the family if they can have the time. After spending so long in the NICU, and now in the loss community, meeting so many families and seeing such a range of outcomes, I could never imagine forcing a family to choose one option or the other. They need a balanced presentation of options and possible outcomes and then to make the best decision for them and their baby based on what they know at the time. Their decision may be very hard to live with either way.

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  3. I find it heartbreaking to hear mothers wanting their babies saved so early. My son was born at 25 and a half weeks. When he was born we were told he had less than a 50% chance of long term survival and that he would probably never walk or talk and I can not express how hard that was for me to hear. He was so tiny but he was a fighter I can’t even imagine a baby born earlier than he was. I am happy to say that he is mostly healthy now. He does have autistic tendencies, an anxiety disorder, hearing loss that requires him to wear hearing aides, he has a leg length discrepancy and is flat footed and is required to wear AFOs (have to love genetics!), and he seems to get sick more often than most children. Having said that he’s doing amazing in school, he’s in all pre-AP classes and is an A/B student. He’ll be 14 years old in September.

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  4. Getting pregnant was not an easy task for me, and so when I became pregnant I was overjoyed to learn I was carrying twins. However my pregnancy was far from pleasant or easy. I required a cerclage at 24 weeks at St Boniface, I was informed at this time that should I go into labor there was nothing they would do for me. Needless to say I was devastated at the time. Thankfully my boys stayed put for two more weeks before I went into labor. At that point I was transferred to HSC where options were discussed with me but the option to resuscitate them was now on the table so it was the only option. From 24 weeks till the day they were born google was always open on my phone. It was those rare stories that kept me hopeful and I read all the less positive ones as well but did not fully grasp or understand the situation we were in. I had the steroids and the antibiotics before they were born to give them a better chance. Knowing what I know now and going through what we did I am thankful that the option was not available to resuscitate at 24 weeks. My boys were not much bigger then my hands, their skin looked so thin and fragile and their were tubes and lines going in and coming out all over them, we could barely touch them. We lost one son our a few days after he was born, he was just too little and not ready at all. Any smaller would have been even scarier and the chances that our child would have made it out as healthy as he did would have been so much lower. I am truly thankful for my son who is still with us who for now has almost no problems other then paralysis of the vocal cord. I do believe that it is an impossible decision and one no one should ever have to make and I wish there was a way to really give informed consent, to prepare them for what lies ahead.

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  5. I am a PhD student in Newcastle, England specialising in the microbiome of VLBW preterm infants. Seeing stories like these really provide some perspective for me by showing the true impact that any work I do could actually have. Thanks to all who have shared their experiences. It’s easy for me to forget about the great stories behind the samples I receive. G

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  6. When I went into labour the first time with my daughter at 23 4/7 we were faced with these questions. Our main goal was to get to 24 weeks. Since we had started bedrest at 15 weeks we as a family had had the conversations about what we would be doing, but not everyone has that chance. We had decided that this was our last pregnancy when there were two lines on the pregnancy test, and that wasn’t going to change if we had a 24 weeker or a termie. Our choice was to give our daughter a week to show us her personality and how she was going to do. If they could intubate and help her in those first days, than that’s what we would do, however that was only if we made it to 24 weeks. As hard as it was to think of letting her go if we couldn’t get to 24 weeks we knew it was in her best interest.

    Now we were very lucky, and although we went through 7 rounds of pre-term labour before an emergency section, our daughter made it to 32 4/7.

    As a NICU and Preemie parent advocate and knowing many many micro preemie parents, it’s not an easy decision to make. And for those who are going through the situation on an emergency basis, I can understand the panic and desire to do everything as your survival instinct. For those who experience high risk pregnancies and know the things that could happen, I find those are the parent’s who have had the discussions. They are also the ones that are more confident with their choices. The parent’s who experience in an emergency situation are the ones that seem to waver later on when they’re experiencing a long NICU stay and the high likelihood of a high needs child.

    With my role in the NICU and Preemie community I wish professionals had discussions like this with their patients, high risk or not. 1 in 12 babies is born premature in Canada, 1 in 12 couples in Canada will face life in the NICU, and a high percentage of those couples are blindsided by it. I also wish that hospitals would send in a Social Worker for families. Medical Pro’s are amazing but have a different way of approaching the situation. I feel that a Social Worker may be able to approach the situation a bit differently. And in a way that parent’s don’t feel that their Doctor’s are trying to tell them what to do or how to proceed.

    Just my thoughts. But as always Michael, great great article with great information.

    Jacqueline
    Founder
    Loved from Head to Toe.

    Liked by 2 people

    1. That is a wonderful suggestion about a social worker. While we had some great doctors who were able to communicate compassionately and accurately about the situation, we had a lot of doctors who were pretty horrible. I wish medical staff had a lot more training about how to talk to families for situations like this.

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  7. I’m truly grateful for a well-written and explanatory post, as well as thoughtful responses. Thank-you for this, from a delivery nurse whose heart aches and mind worries through the moments ahead as she watches patients and families struggle with these often very hurried questions and decisions.

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  8. In 2006 I delivered triplets at 23 6/7 weeks. We decided to do everything in the hospital’s power to save them. They each weighted about 1.5lbs. We spent 5 amazing/stressful months in the NICU in Hamilton Ontario Canada and we are some of the lucky ones. Today our triplets are 9 years old, and healthy. Our only real issue is our one son has some vision loss, he wears glasses and won’t be allowed to drive a car but he still gets around fine on his own.

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  9. Our greatest heartache was our lack of choice when our 23 week 4day old daughter was born in St. Boniface Hospital. As soon as I entered the hospital and the doctor looked at the chart for how many weeks she was, a decision was made. The decision was very cold, “Your baby is going to die.” Other options were never given or discussed. I think the greatest tragedy is the complete lack of hope from the hospital. If the intention was to spare my husband and I any further grief, it did the opposite. We have been suffering this pain that will never go away since the day she died. If we were given a choice, and then she died, it would have been a completely different experience. I attended a meeting for parents that had lost children and I did not relate to the stories of miscarriage or infant loss of others. I related to the parent that had a child that was murdered. I realized that the reason for it was the complete loss of control and the feelings of being robbed of something were the feelings I identified with. Sadly a close friend of mine had the same experience in St Boniface Hospital with her son who was born at 23 weeks. The only option given for her son was death and he was born just a few weeks before Mac. It was difficult for my friend to read the article about Mac and think that there was absolutely no chance given for her son. The decision was made before the patient was seen (born). So I would say with certainty that no baby before 24 weeks is given a chance to live in Winnipeg. It is a policy and will stay that way in the best interest of the parents and public. If any woman thinks that she will get help for her extremely premature baby, they are being naive.

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    1. At the time your friend delivered we had no survivors prior to 24 weeks in a five year period and as a practice did not offer resuscitation to those infants. Mac as you mention would have been the first. Our practice now is to offer resuscitation to all infants at this gestational age. Practice changes have to start at some point and that is when it happened.

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