The Psychological Benefit of Enrolling Your Preemie in Research.

The Psychological Benefit of Enrolling Your Preemie in Research.

It’s World Prematurity Day today and if you are a parent or are caring for a baby who has just entered this world before 37 weeks GA you are now part of a membership that counts 15 million new babies each year according to the WHO’s data.  As I tell most new parents who have a baby admitted to our unit “It’s ok to take some time to adjust to this.  You didn’t plan on being here”.  That is true for most who go into spontaneous labour but of course those who are electively delivered due to maternal or fetal indications that have been followed closely often have time to prepare for the journey to the NICU.  Many of these parents will have had the opportunity to visit the NICU or even connect with other parents before the anticipated birth of their child to at least get a glimpse into what life is like in the NICU.  Much has been written about parental stress and methods to reduce it and I find that a piece that appeared in the Huffington Post offers some good pointers to helping parents manage the transition from pregnancy to NICU.  The piece is entitled 5 Things Never To Say To Parents Of Preemies (And What To Say Instead).  It is well worth a read but the one thing that stuck out in my mind is one very important thing to say.

Congratulations on the birth of your baby

There is no doubt that the family who gives birth to a preterm infant is experiencing stress.  What may be lost in the first few days of surfactant, central lines and looking for sepsis among other things is that a new member of the 15 million strong has entered this world.  They have a new child and just like anyone else should receive a congratulations.  No one needs to tell them to be worried.  They already are and likely view many of the possibilities more pessimistically than you do.  Taking a moment to say congratulations though may go a long way to reminding them that amidst all this stress there is something to rejoice in and look to the future.  If we aren’t supportive then I have no doubt the subconscious message is that they shouldn’t have hope either.  I am not suggesting that we sugarcoat what is really going on but one can be honest about likely outcomes and still celebrate the arrival of a new baby.  Much has also been written recently about a number of strategies to reduce stress in the NICU such as skin to skin care, integration of families more closely into the patient care team and forming parent support groups just to name a few.  What else can be done to improve the quality of life for parents going through this journey?

Enrol Your Baby In A Research Study

I work in an academic centre and given the volume of research projects at any given time there is a need to approach families and sometimes quite soon after delivery.  interestingly, I have heard from time to time that individuals have been hesitant to approach families due to a feeling that they are overwhelmed and won’t be receptive to being approached in this fragile state.  I am guilty of the same thoughts from time to time but maybe it is time I reconsider.  Nordheim T et al just published an interesting study on this topic entitled Quality of life in parents of preterm infants in a randomized nutritional intervention trial.  This study was actually a study of parents within a study that called the PreNu trial that involved an intervention of a energy and protein supplemental strategy to enhance weight at discharge.  The trial was an RCT and unfortunately although well intentioned was stopped when the intervention group was found to have an unexpected increase in sepsis rates.  Although this study did not ultimately find a positive outcome there were additional analyses performed of quality of life and parental stress at two time points the first being during the hospital stay and the second at 3.5 years of age.  The patients were all treated the same aside from the nutritional intake and in the end 30 intervention parents and 31 single parents not enrolled in a study (many in couples) participated in the study.  In followup a little less than 70% completed the stress measures at 3.5 years.  The results are found below.


How Do We Interpret This

The parents in this study who were part of the intervention group were about 3 years older so perhaps with more life experience may have developed some better coping strategies but during the hospital stay those who participated in research had better measures of quality of life and at three years better reports of sleep and energy levels.  The study is quite small so we need to take all of this with a grain of salt with respect to the 3.5 year outcomes as there are so many variables that could happen along the way to explain this difference but I think it may be fair to acknowledge the quality of life measure during the stay. Why might parents report these findings? The finding of better quality of life is especially interesting given that more patients in this study had sepsis which one would think would make for a worse result. Here are a few thoughts.

  1.  Involvement in research may have increased their knowledge base as they learned about nutrition and expected weight gain in the NICU.
  2. Frequent interaction with researchers may have given them more attention and with it more education.
  3. Some parents may have simply felt better about knowing they were helping others who would come after them.  I have heard this comment myself many times and suspect that it would be attributable at least to a certain extent.
  4. A better understanding of the issues facing their infants through education may have reduced stress levels due to avoiding “fear of the unknown”.

Regardless of the exact reason behind the findings what stands out in my mind is that participation in research likely provides comfort for parents who are in the midst of tremendous stress.  Is it the altruistic desire to help others or being able to find something good in the face of a guarded outlook?  I don’t know but I do believe that what this study tells us is that we shouldn’t be afraid to approach families.

After first congratulating them give them a little time to absorb their new reality and then offer them the chance to improve the care for the next 15 million that will come this time next year for World Prematurity Day 2017.


At the Edge of Viability Does Every Day Count?

At the Edge of Viability Does Every Day Count?

Preterm infants born between 22 to 25 weeks gestational age has been a topic covered in this blog before.

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

Is anything other than “perfect practice” acceptable for resuscitating infants from 22 – 25 weeks?

Winnipeg Hospital About to Start Resuscitating Infants at 23 weeks!

I think it is safe to say that this topic stirs up emotions on both sides of the argument of how aggressive to be when it comes to resuscitating some of these infants, particularly those at 22 and 23 weeks.  Where I work we have drawn a line at 23 weeks for active resuscitation but there are those that would point out the challenge of creating such a hard-line when the accuracy of dating a  pregnancy can be off by anywhere from 5 – 14 days.  Having said that, this is what we have decided after much deliberation and before entertaining anything further it is critical to determine how well these infants are doing not just in terms of survival but also in the long run.  In the next 6 months our first cohort should be coming up for their 18 month follow ups so this will be an informative time for sure.

Do Days Matter?

This is the subject of a short report out of Australia by Schindler T et al.  In this communication they looked at the survival alone for preterm infants in a larger study but broke them down into 3 and four-day periods from 23  to 25 weeks as shown below.


The asterisk over the two bars means that the improvement in survival was statistically significant between being born in the last half of the preceding week and the first half of the next week. In this study in other words days make a difference.  A word of caution is needed here though.  When you look at the variation in survival in each category one sees that while the means are statistically different the error bars show some overlap with the previous half week.  At a population level we are able to say that for the average late 23 week infant survival is expected to be about 30% in this study and about 55% at 24 +0-3 days.  What do you say to the individual parent though?  I am not suggesting that this information is useless as it serves to provide us with an average estimate of outcome.  It also is important I believe in that it suggests that dating on average is fairly accurate.  Yes the dates may be off for an individual by 5 – 14 days but overall when you group everyone together when a pregnancy is dated it is reasonably accurate for the population.

Don’t become a slave to the number

The goal of this post is to remind everyone that while these numbers are important for looking at average outcomes they do not provide strict guidance for outcome at the individual level.  For an individual, the prenatal history including maternal nutrition, receipt of antenatal steroids, timing of pregnancy dating and weight of the fetus are just some of the factors that may lead us to be more or less optimistic about the chances for a fetus.  Any decisions to either pursue or forego treatment should be based on conversations with families taking into account all factors that are pertinent to the decision for that family.  Age is just a number as people say and I worry that a graph such as the one above that is certainly interesting may be used by some to sway families one way or another based on whether the clock has turned past 12 AM.  At 23 weeks 3 days and 23 hours do we really think that the patient is that much better off than at 24 weeks 4 days and 1 hour?


If I could turn back time. Needless parental anxiety over brain MRIs in ex-preterm infants.

If I could turn back time. Needless parental anxiety over brain MRIs in ex-preterm infants.

I suppose I am as guilty as anyone with respect to the evolution of this story.  Twenty years ago early and late cranial ultrasounds were employed to give clinicians some guidance as to what to tell parents about their growing preterm infant.  Blood seen on early ultrasounds might influence aggressiveness of care or help us remain vigilant for the development of evolving hydrocephalus.  Similarly, late cranial ultrasounds might detect periventricular leukomalacia or other white matter injury and alert us to a higher risk of cerebral palsy.  Then things changed with the widespread availability of MRI.  As I have mentioned to countless parents, MRI compared to ultrasound is like comparing an old 1 megapixel camera to a modern day 18 megapixel.  The resolution is simply much better and with it our ability to see things that previously escaped our detection.

As utilization of MRI increased so did publications pertaining to its findings.  With the enhanced clarity, white matter lesions that were previously missed became evident and imaging of the posterior fossa or specifically the cerebellum improved as described by Tam et al.  Bleeds in this area that were previously missed could now be readily seen, although more recently use of the mastoid view when performing cranial ultrasound may pick up many significant lesions as well.  Fear in the medical community arose in 2007 after a paper entitled Does Cerebellar Injury in Premature Infants Contribute to the High Prevalence of Long-term Cognitive, Learning and Behavioral Disability in Survivors by Limperopoulos et al. In this study of 86 patients overall, presence of cerebellar injury with or without supretentorial lesions was associated with neurodevelopmental impairment in 66% versus 5% of age matched controls.  Given that cranial ultrasound may miss such cerebellar lesions it seemed prudent to begin imaging all high risk patients at term to determine if there was a significant risk of long-term disability.  As Neonatologists we are often asked if a families baby will be ok and so with the ability to obtain such information why would one not pursue such imaging?

With this finding, utlilization of MRI at term equivalent age became widespread including our own centre.  In hindsight however this practice was not thought out carefully and the ramifications of this decision were significant.  One of the most common things that we teach to medical students is the practice to ask themselves the following question before they do any diagnostic test.

“How will the results of this test influence your management?”

If the result is positive what will you do and similarly if it is negative will this help you in any way.  It is the answers to these questions that leave me with a desire to travel back in time and influence my colleagues to choose a different path than we did.  The problem lies in the meaning of the test, either positive or negative and what if anything we will do with the result that is different than if we had not known in the first place.  This issue was recently highlighted in a large trial from the NICHD entitled Neuroimaging and Neurodevelopmental Outcome in Preterm Infants. The results of the MRI studies compared with cranial ultrasound demonstrated again the superior capabilities of MRI to diagnose cerebellar bleeds but as can be seen in the following table, the absence of any lesions on MRI does not mean the parents should be told all will be well with their infant.

Severity of WMA
Normal Mild Moderate Severe
Cognitive score < 70 4.1 4.3 10.5 22.2
Corgnitive score < 85 20.4 18.2 29.9 61.1
Any CP 2 5.4 5.9 61.1
Moderate to severe CP 0 1.9 1.5 55.6
NDI 4.1 6.2 10.5 55.6

From the table you will note though that with increasing injury, the risk of adverse outcomes increase as well.  On the surface this would imply that the information may be important, as we may be able to tell the parents that we are concerned if the lesions are more significant.  What would we do with this information though that is not already being done?  Herein lies the major issue in all of this.

Modern NICU care entails having a follow-up program for all patients designated as high risk.  In the case of our centre this means having a multidisciplinary team evaluating all infants born under 1500 g.  Infants who in follow-up demonstrate deficits whether they be cognitive, motor or both are provided with the support they need to address these deficits.  Whether the family knows that there is an abnormality in the MRI or not does not influence the trajectory they are on in terms of evaluation and suggestions for any therapies that are needed.  The use of the MRI fails the test that I mentioned earlier.  If it is normal the child may still have deficits or if abnormal the infant could still be unimpaired.  The fact that the degree of severity on the MRI being more predictive of an abnormal outcome does nothing more than provide families with something to worry about pending the formal testing when they are seen in follow-up.

You may think I am being paternalistic to a certain degree but these beliefs were illustrated by a family after their experience at St. Justine in Montreal.  I suspect that the practice has changed there but at the time as was done in Winnipeg, MRIs were done at term equivalent age for all infants under a certain weight.  The case of Maren, a surviving twin, born at 25 weeks gestational age was one in which she was diagnosed with a cerebellar hemorrhage on MRI.  The family took to the internet as many parents do and uncovered the paper on cerebellar bleeds referenced above and spent the next several months in anguish as they waiting for the results of the follow-up testing and moreover seeing how she would develop.  I think this quote from the article sums it up very well as to what the test meant for them.

“In our case, Maren’s MRI gave us no information about what she is like today, it served only to completely terrify us. Maren is now two and a half with no disabilities”

This past month the AAP released a “Choosing Wisely” recommendation on this practice and suggests as I have that it be stopped. I hope for the sake of families everywhere this is widely adopted.  Sometimes it is just better to leave things well enough alone when all that your test will do is create more anxiety for parents who have already experienced enough.