by Janet Nagle
about the author:
Janet Nagle’s son John died suddenly and unexpectedly when medical staff would not listen to her medical information. Thank you, Janet, for sharing your story to help other Duchenne families.
A Duchenne’s Horror Story
I’ll never forget the moment I laid eyes on that adorable little boy. I fell in love with him when he reached out for us with his tiny arms…
When Social Services informed us that he had a form of Muscular Dystrophy, which turned out to be Duchenne’s, we had to make a choice that would seem difficult to most. However to us, there was none because we wanted him home to call our own.
John had a special place in everyone’s heart. He was a joy to be around, and wise beyond the not so many years of his life. He loved his family very much.
He was a genius in the creative arts; incredibly knowledgeable in the infinite aspects of the entertainment industry, always providing information on the latest films, music, and technology associated with it.
We looked to him for expert opinions and he never ceased to amaze us with his insight into a world he found at the tip of his finger. He was a poet who diligently worked to produce the ultimate screenplay, and his enthusiasm for life was never tempered by what many saw as a devastating disability.
April 28, 2007
But fate told a different story on the early morning of April 28, 2007. John spent most of the night chatting with friends on the Internet and at five o’clock, he asked to be put to bed. He was only able to rest for a short while as he needed to use the commode.
After putting him to bed once more, I immediately had to transfer him back and the same happened. Within an hour, he wanted to try again as he complained of not emptying out properly. He rested some more following his efforts, but with much discomfort.
At two in the afternoon, he started complaining about pain on his lower-right abdomen. Thinking it could have been gas, I tried rubbing the area since it occasionally helped in the past, but the pain worsened and come five o’clock, he wanted to be hospitalized.
I couldn’t get him up onto his wheelchair because every time I tried, he felt as if he was about to pass out. I called for an ambulance so they could keep him flat, and he was transported to the local hospital.
The Emergency Room
When he arrived at emergency, he was given an intravenous and they tried to get his blood pressure with little success. They inserted a tube into his neck area in another attempt, but with great difficulty, trying a number of times.
They also did a CT of his lower abdomen but found no obstructions. He was catheterized but had little output. The doctor there told us the outcome looked grim and wanted to transfer him to the Intensive Care Unit.
During that time, I had been in contact with a doctor we had seen once at Children’s in Washington, D.C. He recommended for John to be transported to another D.C. hospital where they had all his records. He thought it could have been a gastro problem and their gastro doctors were at a conference.
He was terribly uncomfortable being fluid filled and heavy, but had no urine output, yet they continued giving him fluids to bring his blood pressure up.
He was taken to the ICU at nine in the morning but still had the same problems. Despite their lack of records, many scratched their heads trying to determine how they might proceed.
Fluid filled and with almost no blood pressure, they intubated him at eleven o’clock. I was told to leave the premises and got ushered outside to the waiting room while they did the procedure. I tried gaining access to John but was never allowed.
At about two in the afternoon, I saw John for a few moments, though I believe the intubation wasn’t inserted correctly because he didn’t think he was going to make it.
Going into cardiac arrest, they tried to revive him with no success.
They Just Wouldn’t Listen
My name is Janet Nagle, and John, my son, died that day because of medical negligence.
Why didn’t they call the doctor who was the Muscular Dystrophy Clinic Director, or at the very least try to contact his primary physician from Children’s?
Those doctors and medical professionals, whom I trusted, were making uninformed decisions, knowing little about Muscular Dystrophy or John. They gave him morphine for the intubation (standard procedure, but not for people with Duchenne’s), and intubated him without air.
Even while John insisted for me to be there, they refused. He never wanted me to leave his side, but I was denied the right to direct them, knowing what they shouldn’t do but did. They just wouldn’t listen.
I could have spent more time with my son, but they wouldn’t let me see him for more than three hours straight. By that time, there was no time.
While I struggle with the anger and sadness that still consumes my heart, I’ll continue living with hope and an upbeat spirit.
John’s last wish was for me to continue the MDA Yard Fair, an event held annually at the Farmer’s Market in Charlotte Hall, Maryland that has raised more than $100,000 for the Muscular Dystrophy Association.
“Do it as long as you can,” my son told me.
This story wasn’t meant to bring people down, but awareness. I hope this never happens again, to anyone. I hope you’ll help spread the word.
And you might think it was silly of me to adopt John, considering the future complications, but if I had the chance, I’d do it all over again.
I never saw him as a boy with Muscular Dystrophy.
Born October 4, 1980, adopted since ten months old on August 11, 1981, and died on April 29, 2007, John Vernon Nagle was my son, my inspiration. He always will be.
John contributed twenty years of his life to promoting the worthy cause of the Muscular Dystrophy Association in an effort to find a cure.
The screenplay of his life shall continue in hope, for others.