Since that post, an incredible shift has occurred in the way that we as a team view attempts at resuscitation at 23 weeks. It took a great deal of dialogue among all health care providers and a deeper understanding of concerns of both Obstetrical and Neonatal colleagues to come to a mutual understanding that could yield a path to move forward. Through dialogue, the damage that had been done by the development of a “broken telephone” was repaired and trust emerged across disciplines which was the only way forward from the beginning.
Why not 22 weeks?
Yes, gestational age is so much more than just a number and must include estimates of fetal size, certainty of dates, parental wishes and several other factors to arrive at a decision that incorporates the wishes of the family. There are certainly significant challenges to informing families during a time of incredible stress as to the options that lay before them but we have to do our best in the time that we have.
When you are crossing that barrier of 24 weeks gestation, despite the caution above about the uncertainty surrounding gestational age dating there is a significant mental leap to move to 23 weeks. The leap to consider 22 weeks is even larger and I would suggest several fold. Is it possible that we would resuscitate such an infant? Absolutely if the dating was uncertain, the family had strong wishes and the team was on board with such a decision but for now this will not be advocated for at all in our city. I suspect similar discussions are happening all over North America and it will be fascinating to see where we land in 5, 10 and more years into the future.
What was the most important change to practice to enable progress?
Prior to 2015 we had one survivor at 23 weeks in a five year period. This year out of five actively resuscitated 3 have survived and at early assessments seem to be doing well. The overwhelming consensus was that skin care needed to be of paramount importance in this process. To that end we began a new process for cleaning the umbilical cord for line insertion with the goal to minimize skin burns on the abdomen. I am proud to report that since we change our technique there have been no skin burns found where once this was commonplace.
The process can be found in this short video here.
For now though, we are about to embark on a new journey in our city and I look forward to the continued collaboration with Obstetricians, Ethicists and all members of the Neonatal team as we explore this new frontier together.
I thought you may find it useful to see how this journey began and where we think it may go by watching this video of myself, Dr. Craig Burym (Obstetrics) and Dr. Aviva Goldberg (Ethics) presenting the approach to resuscitation at 23 weeks from the Neonatal, Obstetrical and Ethical standpoints. The video is about 50 minutes in length but truly addresses issues from multiple vantage points so if you missed it or are interested in how these issues were dealt with please have a look.
(If you are watching this on an Apple computer please use Safari to view)
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.
A couple months ago on my Facebook Page (www.facebook.com/AllThingsNeonatal) I posted the shocking story of a 65 Grandmother Annegret Raunigk who received IVF and was carrying quadruplets. The post spawned outrage among my followers with statements that it was simply wrong while others argued that the risks of the mother giving birth to premature infants who would need extensive support was extremely high and that it was unethical to have done so. From my standpoint I agreed with the comments and so here you have it; the mother (or grandmother) has given birth.
She has delivered four premature infants < 26 weeks gestational age. Assuming they are 25 weeks each the outcomes for these babies may not be as dire as one might think. We would expect for singletons about a 70 – 80% survival with about 50% surviving without moderate or severe impairment. With quadruplets I would expect lower numbers so the reality is that at least two of these kids will have significant health care needs in the future. I would ask that we leave aside the arguments that may ensue at this point by bioethical purists who may argue that the babies’ perception of their quality of life in adolescence would be better that ours. The reality is that even if this were so, this single mother has now given birth to 17 children of which her last four are extremely low birth weight.
Who will be there to care for these children? What about the impact on society? in the next ten years will she have the energy to provide the stimulation, take the kids to all their appointments and so forth that will be needed to ensure an optimal outcome for them from a developmental standpoint?!
This is wrong on so many levels and it is not enough to say as they mention in the article that doctors encouraged her to undergo fetal reduction by one or two fetuses at an early stage. That excuses the IVF treatment in the first place by ignoring the fact that the opportunity to do something about this was missed at the first doctor’s appointment when she asked for the IVF treatment.
Nadya Suleman the “Octomom” give birth to eight premature infants and became known the world over in a sensational news story that followed her through her pregnancy and birth. It is another example of the medical community embarking on a path that lacks responsibility and ignores one of the founding principals of our Hippocratic Oath “To do no harm”. Nadya’s physician in her case suffered one of the most appropriate punishments that California could dole out. He lost his license (http://nydn.us/1d5rSxc), she went on to file bankruptcy, spoke out against the kids she wanted so much and finally resorted to pornography to pay the bills (http://huff.to/1AE5HsR). I can only wonder if the mainstream media’s obsession with Nadya’s story sparked desires for copycat sensational pregnancy stories elsewhere. Annegret Raunigk will not doubt receive a tremendous amount of attention as she already has so is there another agenda over and above to have children that is at work here?
As a medical practitioner it is generally ill advised by the local Colleges to speak out publicly against another physician but in this case this doctor who chose to implant embryos into the 65 year old mother should suffer the same fate and lose his license before he does such a thing again. He lacked judgement and any sensibility in creating a situation that would almost certainly lead to four extremely premature infants being born. I hope the German medical community acts to remove such a physician (I use the term lightly) before he can cause any further damage.
Virtually every popular media site and especially those dedicated to covering the world of Obstetrics and Neonatology have been ablaze with discussions on the NEJM paper Between-Hospital Variation in Treatment and Outcomes in Extremely Preterm Infants. Since this publication, numerous blogging sites have similarly expanded on the coverage with testimonials of success stories of infants born too small or too young who survived and in most cases nearly intact.
Other posts are even more sensational, claiming that the infants have done extremely well and are in fact normal and healthy. The stories capture all of our attention and as feel good pieces give us pause to reflect on the tenacity of our beliefs either for or against resuscitation of these patients. Even more powerful are those instances when our health care teams experience a good outcome at these gestational ages. These types of cases challenge even the most ardent individuals that as a rule we should not intervene before 24 weeks.
How Likely Is A Good Outcome at 22 & 23 weeks?
What we have to remember though is that at least for the 22 week infants < 10% of those reported in the US cohort survived without moderate or severe disability and in the case of the 23 week infants these numbers although better, gave a 1/6 chance of surviving without that outcome. Flipping this number on its head to present a glass is half empty argument, there is a 5/6 or an 83% chance that a child born at 23 weeks who is actively resuscitated will either die or be left with a moderate or severe disability. The blog posts from this group of parents are far less common, although I have no doubt many of these parents were happy they at least tried. Had they not they would have been left wondering for the rest of their lives “what if”?
The purpose of this post is not to debate the rightness or wrongness of the desire to resuscitate or not. Rather I would like to discuss the fallacy of thinking that informed consent plays any role in most of these cases. All too often clinicians hide behind the veil of “informed consent” as justification for the family choosing to move forward with the decision to try to resuscitate these small infants. Is that what is really happening though in most cases? Sadly, in the nearly 12 years I have been in practice in these circumstances I suspect the conditions for true informed consent have been absent more often than not. Yet the Canadian Pediatric Society lists as the third recommendation in the statement “Counselling and management for anticipated extremely preterm birth”
“Decision making between parents and health professionals should be an informed and shared process. Decision aids may be helpful for parents. (Strong Recommendation)”
The issue lies in the criteria to obtain informed consent.
The Merriam-Webster Dictionary provides this definition:
“A formal agreement that a patient signs to give permission for a medical procedure (such as surgery) after having been told about the risks, benefits, etc.”
Unless a family has previous experience with a baby born at 23 or 24 weeks (outcomes after that become quite different), or they themselves work in the field of Pediatrics and have seen the range of outcomes that these children experience, how can they really know what the risks and benefits are?
As a young medical student I recall being told time and time again to be careful about the use of medical jargon. Rather, ensure that you use lay terminology that the parents can understand, in order to ensure that informed consent can be obtained or that the family understands the clinical course of their child. How many times have I talked to families using such words of wisdom only to think in the back of my mind; “do they really understand what I am saying?”.
What do they know of chronic lung disease, PDA, IVH, ROP and a host of other problems? What can they possibly know what their lives will be like in 2, 5 or 10 years down the road should their infant survive but with a host of major medical issues? Add to this, that in many cases there is little time for discussion as the mother presents with rupture of the membranes and goes on to deliver within 48 hours of presentation and often an even shorter time frame. Furthermore, the history of the pregnancy can be extremely motivational in helping a family decide what course is right for them. How does the mother who has had three rounds of IVF perceive the situation compared to the 16 year old who had an unplanned pregnancy. Clearly the psychological factors at play must have a tremendous influence on the decision.
Many parents are simply not in a state to receive the information even if it is presented well.
A study by Boss R et al suggests that what we say has very little impact on the parental decisions (Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns). In this paper, 26 mothers responded to a questionnaire at a minimum of 10 months after the death of their infant who was born between 22 and 25 weeks. After being asked about the discussions they had with their Neonatologist and Obstetricians these were the four main points uncovered.
1. Parents rarely perceive that there are options for delivery room resuscitation. They recall being told information but rarely that compassionate care was even an option even if this was documented in the chart.
2. Physicians’s predictions of morbidity and death are not central to parental decision-making regarding delivery room resuscitation. In essence the parent’s “gut instinct” which was nearly uniformly positive guided their decision.
3. Religion spirituality and hope are the primary values that parents apply to decision-making regarding delivery room resuscitation.
4. Parents feel abandoned without physician hope and compassion. There was mistrust of doctors who only emphasized the negative without a sense of emotion. Relaying the facts is not enough.
When under such stress is it possible for families to weigh all of the true risks and benefits and come to a conclusion that satisfies the requirements for informed consent? Given that to do so requires that an individual be in a state that allows them to process this information and take their time in coming to a conclusion I think in most cases the answer is no.
Planning a Path Forward
If your centre is planning to cross over the threshold of 24 weeks there must be a coordinated plan between the delivering obstetrician, neonatal team and family. Most parents are in no position to truly appreciate what we are telling them either because of the emotional frightened state they are in or because the overpowering urge to “do everything you can” takes a front and centre position in their mind. All we can do as the Health Care providers is to provide them with as accurate information as we can and support each family after they make their decision. Once that decision is made we must also realize that once we embark on a path it is not permanent. If the condition of the newborn is such that survival without severe disability becomes increasingly unlikely we owe it to the whole team (including the family at the centre) to revisit what would be the best course of action.
We took the challenge this year again and I am happy to announce achieved even greater success than last time around! Since the last time we have purchased special clothing to facilitate the practice and with this new initiative perhaps it helped us reach new highs! Here are the results paraphrased from one of our very own!
At St. Boniface Hospital
“663 hours and 29 minutes. This means 2 hours and 4 minutes per patient per day.
The really great part of this is the involvement we had from L&D and LDRP. Both units kept log sheets and informed patients and visitors about the importance of Skin to Skin.
L&D logged 65 hours and 27 minutes for 58 patients which equals more than an hour per patient, their patients don’t stay as long.
LDRP logged a total of 268 hours and 47 minutes for 34 patients which is more than 8 hours of skin to skin per patient and baby. LDRP had some parents who did more than 15 hours during their hospital stay, one family logged 34 hours!
At HSC
321 hours of KC in the 3 Neonatal Areas combined!
.5 hours per patient per day eligible for KC! (excludes those too sick)
How Does This Compare to Last Year (For St.B)?
Sunnybrook NICU in Toronto put out a challenge to promote Kangaroo Care for a two-week period to in the NICU. We took the challenge at St. Boniface Hospital and here are the results…
Our dates were from April 13-27.
We totaled 647 hours and 10 minutes, equals 27 days worth of skin to skin.
Total of 36 babies in the unit, another 14 infants that were held KC while in a C-section or being monitored by our Observation staff (these babies had TTN and were being transitioned KC in L&D and LDRP.
We had 9 long term micro premies that were in the unit at the time of the challenge, they averaged 33-69 hours during the two week period.
Not bad at all I say based on the number of babies we had! This represents an average of 18 hours of KC per baby over that time!
You have likely heard of Kangaroo Care and you may have even seen some children receiving it in your hospital. Why is this so important?
Kangaroo Care (KC) or Skin to Skin Care (STS) is an ideal method of involving parents in the care of their premature infant. It fosters bonding between parents and their hospitalized infant, encourages the family to be with their child and thereby exposes them to other elements of neonatal care that they can take part in. While we know that many units are practising Kangaroo Care there is a big difference between having KC in your unit and doing everything you can to maximize the opportunity that your families have to participate.
There is much more to KC than simply holding a baby against your chest. For a demonstration of KC please watch the accompanying video and show it to any one in your units that may need a visual demonstration. This excellent video is from Nationwide Children’s Hospital and walks you through all of the important steps to get it right and maximize benefit.
https://www.youtube.com/watch?v=_MateX87u9k
Before you reach the conclusion that KC only serves to enhance the parental experience it does so much more than that. The practice began in Bogota Columbia in 1979 in order to deal with a shortage of incubators and associated rampant hospital infections. The results of their intervention were dramatic and lead to the spread of this strategy worldwide. The person credited with helping to spread the word and establish KC as a standard of care in many NICUs is Nils Bergman and his story and commentary can be found here http://bit.ly/1cqIXlm
The effects of KC are dramatic and effective to reduce many important morbidities and conclusively has led to a reduction in death arguably the most important outcome. An analysis of effect has been the subject of several Cochrane Collaboration reviews with the most recent one being found here.
To summarize though, the use of KC or STS care has resulted in the following overall benefits to premature infants at discharge or 40 – 41 weeks’ postmenstrual age:
Reduction in
mortality (typical RR 0.68, 95% CI 0.48 to 0.96)
nosocomial infection/sepsis (typical RR 0.57, 95% CI 0.40 to 0.80)
hypothermia (typical RR 0.23, 95% CI 0.10 to 0.55)
Increase in
KMC was found to increase some measures of infant growth, breastfeeding, and mother-infant attachment
To put this in perspective, medicine is littered with great medications that never achieved such impact as simply putting your child against your chest. This is another shining example of doing more with less. This is not to say that modern medicine and technology does not have its place in the NICU but KC is simply too powerful a strategy not to use and promote routinely in the NICU.
Please join me in championing this wonderful technique and make a difference to all of our babies!
A sample of our parent letter to promote KC is found in the link below.
To that end we began a new process for cleaning the umbilical cord for line insertion with the goal to minimize skin burns on the abdomen. I am proud to report that since we change our technique there have been no skin burns found where once this was commonplace.
