In the late 1800s, childhood illness and death were a part of everyday life. This did not make it less impactful, less painful, or create less of a void in families, but it wasn’t the taboo subject it is today.  The treatments physicians offered were focused on managing symptoms.   Families cared for their children in the home and if their child died they remained at home, surrounded and supported by family. It was not unusual for friends and neighbors to have suffered similar losses, creating a wide circle of support for families during their grief.

Then came medical advancement.  Antibiotics and immunizations were discovered, leading to significantly improved outcomes and all of a sudden the majority of childhood deaths were now preventable.  Physicians were miracle workers offering life where there used to be certain death.  However, even miracle workers don’t have a 100% success rate.  No matter how many medications and immunizations were discovered, children still died.

Unfortunately, the community support and experience of childhood death was no longer there.  If children got sick and were unable to be helped by a physician, parents didn’t want to discredit the physicians and call them a failure. They also didn’t want to be seen as failures for letting their child die. Neighbors and friends didn’t want to be around death anymore. Gathering around a dying child at home was no longer seen as the “normal” thing to do. Sending them to the hospital and trying everything possible to save them became the norm.

To discount these advances would be negligent. Pediatric physicians do amazing things every day to give extra time to kids and their families. They provide care, comfort, and support to families when they need it most. As a society, however, we still tend to get hung up on the ideas of “success” and “failure.” Children dying are seen as a failure. Keeping them alive, no matter the physical and emotional cost, is seen as success.

What if we viewed this in a different way? Perhaps it is not a failure that a child dies, but rather if that child is uncomfortable when they die. We might view it as a failure if children die in a location that is not their desired place to die. Or if their family didn’t get to express their wishes of what that death would be like.  It could be considered a failure if the child -- who with a similar condition may have died in the 1800s but with current healthcare would now live -- faces a life of chronic, complex illness without the appropriate resources to provide comfort and support. As a society, we have failed that family who, in the depths of doctors, nurses, home health, hospitals, pediatrician appointments, specialist appointments, financial and social distress are never asked, “How are you?  What would you like this picture to look like and how can we help you make it so?”

Success

  • Success is not keeping children alive regardless of the outcome.
  • Success is a family being where they want to be with the people they want to be with when the child dies.
  • Success is the child being comfortable and getting to be a child.
  • Success is siblings sitting in bed on whoopee cushions, because fart noises are hilarious.
  • Success is families sitting together, relaxing, drinking wine, and sharing memories of their child.
  • Success is laughing.
  • Success is crying.
  • Success is the family saying “this path is difficult. More difficult than anyone who hasn’t walked it can imagine.  But we got to choose the path and have been supported every step of the way.”

by Lily G., Transitions Kids Program Manager