Megan Barnes, 1985-2004
Simon’s Law, Kansas Senate Bill 437, would require parent permission before a minor is coded as a Do Not Resuscitate (DNR) and would also require hospitals and other medical facilities, upon request, to disclose any existent “futility” policies. (See more here.)
This is the latest in a series from Kansans for Life that looks at the real lives affected when Do Not Resuscitate (DNR) orders are unilaterally issued by physicians. In the following, Ann and Frank Barnes share the details of how this practice ended the life of their precious daughter, Megan.
“Both our beloved daughter, Megan, and Simon Crosier– for whom the Simon’s Law legislation is named– were born with the same rare syndrome but Megan’s diagnosis was not immediately detected. She was full term but small, with a ventricular septal defect and a minor lip defect. Such signs alerted doctors of possible chromosomal problems, so a blood sample was sent for genetic testing. We were, however, able to bring her home at a week old.
Megan was over two months old when we heard the words “Trisomy 18” and the heartbreaking news that these babies fail to thrive and her life would be brief– up to a year at most. When questioned as to what would cause her death, the response was a vague, “these babies don’t do well.” Hospice was suggested, but accepting Hospice care would be accepting the diagnosis which our hearts were not ready to do.
She was our daughter and loved, perhaps even more so, because of those predictions.
The fear of Megan dying weighed heavily on our hearts until we stopped waiting for her to die and began finding ways to help her. But in 1985 there was a lack of information about survivors living with this syndrome. We felt alone and longed to meet another child like Megan.
Her geneticist gave us a newsletter from the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) when she was about 6 months old. What a life changer! SOFT became both a life-line of information and a second family, with children like our daughter. SOFT also has a compassionate medical advisor who has helped families for over three decades. Because of the tremendous sense of worth given to each child at the annual SOFT conferences, we attended many, and still do.
I cannot tell you the number of times we said how glad we were to have Megan. She gave us purpose, and taught us about patience, perseverance, resilience, unconditional love, and more. She had a sweet disposition and, like any child, enjoyed attention and praise. Though she could not talk, she definitely let us know her preferences. All-time favorites were the Disney video, Beauty and the Beast, a Texas Instrument toy– replaced more than once, and her 17th birthday party. She enjoyed music and movement and the activity of physical therapy sessions.
Megan was content and knew she was loved, and it was obvious that what she valued most was being with people, especially those who loved her.
On Christmas Day, at age nineteen, Megan was hospitalized for virus-caused dehydration, in a pediatric intensive care unit at a major teaching hospital.
She died four days later.
We were devastated.
Only after her death did we request her hospitalization records and learned the horrible truth that our wishes for life support intervention had been overruled by a verbal order from the “attending” physician to his staff. Megan had been issued a Do Not Resuscitate (DNR) order without our knowledge or consent.
Had there been a requirement for a parent signature on a life support order in that hospital, this would not have happened.
It added so much more pain to our grief to learn that our daughter died because we trusted the wrong physician. Instead of providing needed intervention, he misled us about what was happening, allowed her condition to decline, and then said there was nothing that could be done.
MEGAN’S LAST GIFT
Our daughter’s end-of-life lesson is about the vulnerability of parents and their children when the child is hospitalized. Parent-physician trust requires transparency and respect.
We believe any physician (hospital, medical society or hospital association) opposed to the parental signature requirement on a life support order, as proposed in Simon’s Law, has something to hide; and in some cases wants to control the outcome due to personal views about a particular disability or illness.
Megan outlived the survival statistics we were given when she was an infant, and she is not the only one with Trisomy 18 or Trisomy 13 to have done this as a number of survivors are now young adults! They have health issues, developmental challenges and a life-limiting disorder, but most importantly, they are living evidence that it is incorrect to claim these disorders are universally lethal.
Clearly, the risk of a Do Not Resuscitate (DNR) code being imposed without parental knowledge or consent is increased for children like Megan and Simon. And this dire risk also applies for any child who suffers critical injury or illness.
We fully support Simon’s Law to help prevent this injustice from happening to another family.”
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