When Children Die

Like many other people from Ottawa, I have been very much affected over many years by the courage of Jonathan Pitre, who passed away on Wednesday evening. He was 17 years old and suffered from epidermolysis bullosa. There have been tributes for Jonathan from so many, including hockey players and civic leaders and journalists, as well as Moms and Dads and all the rest of us. One of the most moving tributes came from the journalist, Andrew Duffy, who has followed Jonathan’s story over many years.

Hard upon this story came the news of an accident in Saskatchewan that resulted in the death of 15 members of the Humboldt Broncos of the Saskatchewan Junior Hockey League. Most who died were under 20.

When I read through the tributes to Jonathan Pitre and his mother, or those for the Humboldt Broncos and their families, I feel so grateful that I have never had to cope with such a difficult event in my life. I wanted to write about this, but I wanted not to focus on advice on how to manage such tragedies.

I’ll give some references, in case some readers were hoping for advice. This is a great article from The Guardian considering one woman’s experience with the death of her child. I found that this article really helped me to contemplate how to be a comfort to someone facing this tragedy. I also found this article addressing what not to say to a parent whose child has died very helpful. The only guidance I would add to this list is: Be extra cautious about social media – it can catch people unawares, causing additional, unnecessary hurt.

I learned all I ever need to know about what it would be like for a child to die from the two women in my life from whom I have loved the most: my mother and my daughter.

My mother had two children who died very young. My oldest brother died of influenza in 1955 at age 2. This was 18 years before the World Health Organization first introduced flu vaccine recommendations for general use. A second brother died in 1956 of RhD hemolytic disease of the newborn. This is a condition that occurs when a mother who has an Rh negative blood type develops antibodies after being exposed to her child’s Rh positive blood during pregnancy. These antibodies may affect Rh positive children in subsequent pregnancies. The antibodies can cause severe illness, including death. In 1968, anti-RhD immune globulin (Rhogam) was introduced. By injecting inject mothers who were Rh negative with Rhogam, RhD hemolytic disease could be prevented. My brothers died too young to benefit from these medical discoveries.

As a child, and even as an adult, I could never completely understand my mother’s ongoing sadness over my brothers. However, in the hour after my daughter’s birth, having held her for not more than twenty minutes, I understood what every new parent also quickly understands: I could not bear it if I lost this child. I ceased to wonder about my mother’s sadness. I no longer wonder at any parent’s sadness. I know I would be inconsolable if I lost any of my children and that is what Jonathan’s mother and the families of Humboldt are going through today. Are we not all with them in spirit?

I also have one piece of advice that I can give. It is contained in this blog I wrote for The Scientific Parent. Sadly, it is one of the most popular blogs I have ever written. It provides advice on how to help children cope with difficult news. The Scientific Parent used the blog so much that they developed a graphic to go with it. I would like nothing more than for its circulation to end, but more realistically, I am glad if it is helpful.

Get the Flu Shot – Promote World Peace

Tomorrow, nursing staff in the Youth Program at the Royal will offer the flu vaccine to inpatients. This is the kind of public health work that nurses often do, education and prevention, and they are very good at this work. But, inevitably, from time to time, they will have to present the science that vaccines work and I have pulled together my approach to flu vaccine advocacy.

I prefer the World Health Organization website information which includes an article that lists the proven benefits of vaccines, including all the scientific references. Let me present the abbreviated version I’m going to use if anyone asks me tomorrow why I think they should use vaccines.

I remind my patients (and anyone who’ll listen, really) that there are four different categories of vaccine-related benefits: diseases are controlled; the unvaccinated population is protected; related diseases, even cancer, can be prevented; and there are other societal benefits as well, such as economic growth, promoting equity and even peace. These benefits are all proven in studies and the WHO website lists those studies for the skeptical.

To present a compelling argument regarding disease control, I am going to keep handy the picture below of the statue erected at World Health Organization Headquarters when smallpox was eradicated. Smallpox was declared eradicated in 1979, almost forty years ago. This took an international effort and even countries that couldn’t get along for other reasons got along to eradicate small pox. They are now working to eradicate polio, with a timeline to complete this by 2018 – next year. This will be a historical event of great importance, again the result of a level of international cooperation that is now rare.

I am going to emphasize that vaccination against certain infections can prevent other diseases, including cancer. Prevention of chronic liver infection with the Hepatitis B vaccine can prevent liver cancer and even now, barely 10 years after the introduction of the HPV vaccine, scientists are measuring the decrease in incidence of cervical cancers caused by serotypes 16 and 18.

Finally, I am going to speak about all the societal benefits. I am going to begin by summarizing the savings. It is well-established that public health measures save $7 for every $1 spent, but vaccines are sometimes even more economical. Some studies are now available that show that $10 can be saved for every $1 spent fully vaccinating very young children.

As for equity, the burden of the diseases that vaccines can prevent is borne mostly by the disadvantaged. When this burden is lifted through vaccination, these groups are more likely to flourish.

As for peace, the United Nations Children’s Emergency Fund (UNICEF) has medicated at least 7 cease fires during civil conflict that were related to vaccines. Even people in conflict can resolve some differences so that disease can be prevented.
Being vaccinated is one of the few things a person can do for the greater good and know that they are being effective.

I hope that my young patients will be convinced with this science of the value of vaccines, but I will still thank them just for listening to my public health service announcement. I have also made cookies that look like viruses (sort of) for the vaccination celebration. Vaccines deserve celebrating, I’ll tell them.

Get the flu shot. Have a cookie. Promote peace.

Journalism and the Scientific Method

Three years ago, I reviewed Seth Mnookin’s book The Panic Virus. In that review, I noted the importance of science reporting in assisting the public’s understanding of scientific research and science in general. Keeping this in mind, I want to highlight an article from the Ottawa Citizen by Elizabeth Payne, a Postmedia health reporter. The article addresses the question, “Could infections cause Alzheimer’s?”

In her article, Payne considers the controversy about the link between microbes and Alzheimer’s disease. She reports that those scientists who favour the microbe hypothesis have made a widespread plea that the public “embrace” their hypothesis.

Payne’s reporting is factual and clear. It leaves the reader with the opportunity to consider whether the microbe hypothesis research supporters or the plague hypothesis supporters are more credible. It calls upon us implicitly to consider both theories, but to remain open to the results of the ongoing research on Alzheimer’s disease. To be open to possibility, to be able to assess alternatives as revealed by rigorous study, is the essence of science. Through her reporting, which points out the conundrum of a controversy in scientific research, Ms. Payne makes it clear why the public should not, in fact, “embrace” a hypothesis until the research and much more consideration yield a clear result.

I am a clinician, not a researcher, but I work in a university teaching hospital affiliated with a research institute and so I have participated in clinical studies. When focused on one’s own research study, it is easy for a researcher to become attached to trends that one believes are emerging from one’s research. I have done enough research to realize how dangerous this is. I have learned that one must be faithful to the scientific method that has fostered the real breakthroughs.

The scientific method is systematic and allows for the modification of the hypothesis. Learning the scientific method is one of the first lessons in science class in elementary school. I remember having to devise experiments in Grade 3, not for a science fair project or research but to demonstrate that I understood the scientific method. That same lesson was repeated at the beginning of many grade school science classes for years to come. The scientific method is fundamental but, like all fundamentals, it is more easily expressed than understood. Ms. Payne’s excellent article reported some news from medical science and reminded us of how difficult it is to learn the scientific method.

(Note: The excellent graphic depicting the Scientific Method included here comes from the Science Buddies Website. Science Buddies is an award-winning, not-for-profit organization dedicated to building scientific literacy.)

My Expertise in Bad News

Most writers love to have a piece that people read over and over and, in general, I am the same way. Having said this, my second most popular blog, which is published on The Scientific Parent website http://thescientificparent.org/, has been reposted and read more often that I ever wanted or would like.

The particular blog is a piece that I wrote for The Scientific Parent at the time of the Lafayette Theatre shooting in July 2015. Almost a year has past and this post has been republished and read so often that it is becoming disconcerting. To me, it emphasizes how often the news is so terrible that we have to worry about its impact on children. We also have to wonder how much to tell children and how much we should try to protect them from seeing or hearing.

I will let you read the piece and use what is useful to you within it, but I want to reflect on some of the times in just this past year when you might have been able to use this little guide on talking to children about terrible events.

Here’s a short list off the top of my head, in no particular order of some of the issues that distressed the youth in my practice, before today’s shootings in Orlando:

  1. Mass Shootings: There are an average of 1 per day in the United States, all of them get coverage and so young people can always find one where the circumstances relate to their situation.
  2. The Paris Attacks in November 2015.
  3. The Refugee Crisis, in Europe especially but also around the world.
  4. The abduction of girls and women by Boko Haram.
  5. The Brussels Attack.
  6. The Attawapiskat Suicide Crisis.
  7. The Fort McMurray Fires and Evacuation.
  8. The attacks in Tel Aviv.

I see only adolescents in my practice. Even though they have mental health problems, like all adolescents they want to change the world. In fact, when they begin to feel better, many of my patients have a new found optimism that they will be able to make a difference. When I wrote this piece for The Scientific Parent, I thought about the advice I have given that people told me was most effective. I am pleased that this advice is useful since I want children and youth to be able to see past these tragic events to a better time.

With that in mind, I left out one piece of advice in that article: the advice to share with them the positive aftermaths of people and communities coming together to heal and care for those affected. Fortunately, these are as certain as the tragedies themselves so watch for them and celebrate them with children. Research tells us that to be hopeful and optimistic begets resilience. In this difficult world, we need to help build resilience.



“Balance” or Bias: My Favourite Vaccine Book

The book The Panic Virus by Seth Mnookin inspired my blogging project for the summer, which was vaccines. The author explores why the myth that vaccines cause developmental disorders persists despite extensive research that demonstrates just the opposite. http://sethmnookin.com/the-panic-virus/

Mnookin follows the course of a theory by a now discredited British gastroenterologist, Andrew Wakefield, that the measles-mumps-rubella vaccine causes autism. How Wakefield’s theory found fertile ground in the minds of parents struggling with an autistic child and with their search for answers is well-developed in the book and exposes two problematic aspects of science and science reporting.

In reviewing the meeting of a group of 51 specialists who had reviewed HMO patient records via the Vaccine Safety Datalink at the request of the Centers for Disease Control, Mnookin considered both how science works and the importance of accurate scientific reporting.

Mnookin reminds us that the central distinction between science and ideology is through the theory of “falsifiability”. This theory asserts that, in order for a subject to be a legitimate topic for scientific study, it must have a single, corresponding null hypothesis that can be disproven. This is fundamental to the scientific process in that, since it would be impossible to prove a negative, the closes one can come to proof for any theory is through a thorough effort to prove the null hypothesis.

There is a complexity in the null hypothesis that means that scientific reporters have to understand science sufficiently to be able to communicate this. Also the “debate” on vaccine safety has suffered by the journalist’s ethic to provide “balanced” reporting. This has meant, in some circumstances that the “balance” has been a false. To illustrate this, Mnookin cites a study from Cardiff University in Wales. Towards a Better Map: Science, the Public and the Media by Ian Hargreaves, Justin Lewis and Tammy Spears: http://www.cardiff.ac.uk/jomec/resources/Mapdocfinal_tcm6-5505.pdf This study examined how the media affects the public’s understanding of science, using studies on a link between MMR vaccine and autism. The study found that 70% of media stories related to MMR vaccine mentioned a link with autism in contrast to 11% that reported on the vaccine’s safety record. “Balance” for the overwhelming safety record of the vaccine was provided by the “junk scientists” whose research was poor, if not unethical. The result of this “balanced” reporting was that most people began to believe that the MMR vaccine, and vaccines in general, were not safe.

Mnookin outlines some of the tragedies caused when the safety of vaccines is questioned and the public health benefit they provide is disregarded:

  • In 2009, six unvaccinated children in Pennsylvania were infected with Hib, a disease previously eliminated in the United States. Two of these children died.
  • In October 2010, the California Department of Public Health reported 5500 cases of whooping cough. This was the highest number of cases in California since the pertussis vaccine had been introduced in the 1950’s.

Physicians, as well as the public, are now aware of more and more outbreaks of diseases across North America that are known to be prevented by vaccines. Mnookin accounts for this by the platform journalists have provided to “junk science” in the name of “balance”. He also noted that several states have introduced laws mandating education on “both sides” of previously proven scientific tenets, e.g. evolution or global warming or vaccine safety. This is not education and it’s not “balance” either.

Why does the “balance” of journalism trump the truth? I would say because tragic stories sensationally told sell the news. Mnookin tells the story of how the use of vaccines as an important public health measure have been undermined by the media. His book gave me the tools to further advocate for vaccine use and I recommend to anyone for whom vaccine safety is at all in question.


The Summer of Vaccines

Since I have come home from the World Health Assembly, vaccines have been on my mind. They have been on my mind so much that it has been impossible to think about anything else in a considered enough fashion to be able to write about it. I have been reading books about vaccines and vaccination, but I have more material than one short, pithy blog and, as well, I find that I want more information. It was the World Health Organization (W.H.O.) itself and the World Health Assembly in May that started me thinking about vaccines, so let me begin this summer series by telling you about that.

There is something about the World Health Organization Headquarters that  guards against infectious disease, that reminds me of immunization and sterile environments. It starts in the expansive front lobby of the main headquarters building with its expansive, white marble slabs, crisply laid into floors and wide steps so that dirt cannot hide and on which every speck of dust would glare from its pristine surface. “Clean me!” it screams at the end of a rainy day when mud has been tracked over the glistening expanse. From the ceiling of the foyer hang the 194 flags of member nations. Row upon row, they form a symbolic banner saluting the collective intention to make a healthier world and keep it healthy.

Outside of W.H.O. Headquarters, on the main lawn are two statues. The oldest shows a child leading a man, who is blind, a victim of river blindness. The statue honours the efforts of the W.H.O., Private Corporations, Non-governmental organizations and health care providers who have virtually eradicated this disease through a combination of judicious insecticide use and vigilant treatment. The treatment with the drug invermectin must be undertaken for fourteen  years, the length of time the worm/parasite can live in the human body.

The second statue, cast in bronze and stone, depicts a girl about to be vaccinated. The other three figures represent the health care professionals, community leaders and agencies who have supported the efforts to eradicate smallpox. This statue was erected in May 2010, on the 30th anniversary of the eradication of smallpox.

The prevention and treatment of infectious disease are among the greatest successes of medicine. In fact, medicine’s most important acts are either large or small. The small measures are the day to day care provided by health care workers to the sick or injured, the individual comforts for which individual doctors or nurses are so highly prized. The large scale measures are public health successes, like vaccines or the treatment for a debilitating disease. Normally, when I write, I focus on the small measures related to patient care but this summer, as a means to learn more about vaccines and public health, I will consider the large scale successes of health care.