I have anxiety and nightmares. Certain smells and hallways trigger memories every single time. Yet sometimes the memories return out of nowhere like a beeping sound from someone’s phone reminding you of the monitor alarms. None of this ever got easier…
Those words were written this spring by Megan Short, the mother of a two year old daughter Willow who received a heart transplant as a newborn. In a special post on the Mended Little Hearts of Philadelphia web site, she shares feelings any parent whose child experienced medical trauma can understand: fear and overwhelm, and the sense that her life would never be the same. Any parent who has sent a child — particularly a baby — into the operating room for major surgery can identify with the memories she shares.
What, thankfully, seldom happens to those parents and their families is what happened to the Short family last weekend. In a horrific turn of events that may never been totally understood or unravelled, the entire Short family was found dead in their home, a murder-suicide that took the lives of the parents and their three children, including two-year-old Willow, her transplanted heart lost to a family’s untreated emotional trauma.
The full story is available online, and more information is being revealed as investigators uncover it. What will be clear to other families like the Shorts, however, may not be clear to the police. What families who have been through medical trauma understand is that, as Megan said in her blog post, we are never, ever the same. There are undeniable ripple effects from the helplessness, fear, and responsibility that cannot be explained in a parenting book. From the heartbreak of imagining your child’s death to the realization of her fragility when she survives, life is forever changed.
Add financial struggle to the emotional strain, and the anxiety can compound many times over. In a New York Times story, Megan talked openly about the challenges of managing her daughter’s anti-rejection medication, anxious each month about the tight window during which she could refill the prescription from the only pharmacy her insurance allowed. Knowing, every month, that your daughter’s life depends on the bureaucracy of a system that cannot make exceptions, takes a toll.
Megan’s other two young children were old enough to recognize their mother’s stress. Megan’s husband, described in multiple news articles as a family man who worked hard and loved spending time with his wife and children, surely knew what Megan was facing. Anxiety like this is hard to hide, and Megan was open about her need for help, which she eventually sought through therapy and medication. Stories in multiple press sources describe Megan as deeply involved in a community of other “heart moms,” mothers of children with congenital heart defects. Her marriage was suffering after two years of PTSD from medical trauma and all the logistical issues it brought. The couple seemed, from all accounts, to be on the brink of divorce.
What was the final straw for this family? We will never know.
So many things can go wrong when a system treats a child as the only one who needs attention in a medical emergency. A 2014 study found that all parents of children who spend time in a neonatal intensive care unit should be considered at high risk for post traumatic stress disorder. What, then, should be the treatment — or even prevention — protocol? When a child is diagnosed with a life-threatening illness or birth defect, does nothing trigger the medical system to monitor and/or treat the parents for the accompanying stress?
The trauma of illness pushed the Short family to the brink. No matter what the investigation reveals — that Megan ended their lives or that her husband Mark did — there can be no question that PTSD played a role.
As I reflect on my own family’s journey through medical trauma — including my daughter’s two cardiac procedures and dozen endoscopies — I am torn between gratitude for the magic, invisible glue that has held our sanity together, and deep fear at how close we may have come to an end like the one met by the Short family. I, too, spent hours fighting our insurance company on the phone. I, too, sought comfort and solace from parents in similar circumstances. We, too, have a healthy child who watched it all happen. Somehow, we have come out well on the other side. Perhaps that is by grace. Perhaps it’s something else.
In the end, we are not more worthy than any other family, and so as I mourn the senseless deaths of these two adults and three children, I challenge the medical establishment to consider how they are supporting and protecting the lives of the children they’re treating. After all, they’re sending those children home to their parents.
After all, they sent Willow home to Megan and Mark.
This is a Finish the Sentence Friday post based on the sentence, “when it comes to the news, I…” FTSF is hosted by Kristi of Finding Ninee.