In response to recent reports of measles in the United States, author Roald Dahl’s 1988 letter encouraging parents to vaccinate their children with the measles vaccine is once again circulating on social media.1 The letter, written for the Sandwell Health Authority after the release of the controversial MMR (measles, mumps, rubella) vaccine in the United Kingdom, chronicles the ordinary course of his daughter Olivia’s measles and her subsequent death in 1962 from measles encephalitis. The letter has been used over the years as a vaccination encouragement tool by several medical campaign groups.
I enjoyed Roald Dahl’s books when our own children were young. I loved his colorful characters and the way they dealt with villainous antagonists. Justice was always so, so sweet in many of Dahl’s stories.
I have much empathy for Roald in the loss of his daughter. Sometimes in life there are those incredibly horrific moments when there is a clear “before” (a child laughing and playing just fine) and “after” (a body limp and lifeless). I had such a moment with our first baby when the doctors called for the crash cart just after he was born and began pumping him full of epinephrine, willing him to breathe. I screamed the primal scream of a parent who knows that moment will forever be the line that divides the Time Before and the Time After. It’s horrible to be on the wrong side of some pretty extreme odds, and I wish no mother or father the pain of crossing that line.
When these devastating losses happen we ask ourselves why, and we search for answers. Those answers become the narratives of the cautionary tales we then tell to the world: get annual mammograms, never co-sleep with your child, don’t allow children near water, never keep guns in the house, vaccinate your child, have a medicalized birth. Or: avoid radiation, don’t sleep away from your child, be sure to have a weapon, never inject your child with poisons, have a natural birth or home birth.
So it’s complicated, because there are often risks both ways. The choices we make are largely a reflection of our philosophical approach to life and health.
Roald Dahl’s story demonstrates this dilemma for us. I don’t know why his daughter got encephalitis after measles while millions of other children recover without complication. Could something have been done that would have altered the outcome? We won’t know that answer. Would she have gotten encephalitis from the vaccine? We won’t know that either.
Dahl came to a rational conclusion based on his experience, and we have to honor that. Like all of us who have lost a loved one like this, we want to roll back time to that moment when we feel we could have done something different that would lead to a different outcome. And we want our experiences to have meaning for others, so we tell our tales with the hope that it will make a positive difference.
How much should Dahl’s experience, or anyone else’s personal experience, influence our decisions? Perhaps it is enough to listen and understand and know that personal experiences are important to weigh along with other important information we gather when making a conscious decision about risk taking.
In the end, we all have to live with the decisions we make, and we have to accept that which is out of our control. In 2015 Dahl’s grandson, Ned Donovan, commented on his grandfather’s experience: “Olivia was unlucky. Her case was one of the very few that progressed into something much more serious, something fatal. Measles encephalitis—when the measles virus spreads into the spine, and then the brain—occurs in 0.1 percent of cases.”2 Although I grieve deeply for the death of our infant son, I am also at peace because my husband and I feel comfortable with our choices surrounding his care. Like Dahl, we were unlucky and ended up on the wrong side of terrible odds.
Because there are risks both ways, personal and parental choice is critical in the case of vaccine decision making. At the end of the day, the people who have to live with the outcomes of the risk taking decisions they make are the ones who should make the decisions.
It is also true that while the world is a wonderful place, it also can be a dangerous place. We can mitigate risk through the use of seatbelts and safety helmets, lifeguards and chaperones, but accidents happen. The freaky and unforeseen happens. The odds are not always in our favor.
And despite antibiotics and vaccines and medicines, viruses and bacteria will always be with us and illness and, sometimes, premature death will be an inherent part of living. Sometimes, despite taking all the precautions, we will be unlucky.
We cannot make the world risk-free for anyone, including the immunocompromised, the disabled, the elderly, or the very young. Life is, in the end, a wonderful but inherently fragile and risky proposition, made better when we come to peace with its terms.
This article or commentary provides referenced information and perspective on a topic related to vaccine science, policy, law or ethics being discussed in public forums and by U.S. lawmakers. The websites of the U.S. Department of Health and Human Services (DHHS) provide information and perspective of federal agencies responsible for vaccine research, development, regulation and policymaking.
1 Dahl R. Roald Dahl on Olivia, writing in 1986. RoaldDahl.com.
2 Donovan N. Why my grandfather, Roald Dahl, wanted you to vaccinate your kids. The Daily Dot Dec. 11, 2015.