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Today’s post is something that I write with a lot of remorse and regret. It is about the death of one of my patients who died after suffocating on his home bed. Had I acted fast, it would have been different but sometimes back, I was this procrastinator who would not report things the moment I saw them. Without beating around the bush, this post is about a muscular dystrophy patient who died from entrapment because we did not have hospital beds at the time of his demise. I hope you now see why I am so remorseful and blame myself for not having acted fast. Anyway, I do hope that it will be a lesson to all those care givers out there to get the best hospital bed for home care for their patients at home.
His name was Martin and he was a joyful kid. He was not the kind to mince with words. If he saw something was not going the way it should, he would directly point it out and care less whether you would get offended by his direct reprimands or not. Martin had been diagnosed with duchenne muscular dystrophy at 10 years. Before then, his family thought that he was suffering from calcium deficiency and so they would get him supplement of the same to no avail. Then our organization invited some medics from the US to come conduct a medical camp in the country.
Martin was one of those kids who benefited most because apart from getting the right diagnosis, he was also given a special wheelchair to support his torso and ease his mobility. Unfortunately, they said that Martin would continue losing strength in his muscles and the best that we could do is give him the best attention until his demise.
The attention that they were talking about included:
Getting Martin some muscle steroids
Though these steroids would not completely heal him of muscular dystrophy, they would be handy in giving his muscles strength. The downside was that they would cause water retention and as such man boobs and other undesirable characteristics but they were better than nothing. After telling this to the administrators in my organization, Martin was able to temporarily gain strength in his limbs and make movements.
Getting him a hospital bed
The medics stressed on the need for comfortability. You see a time would come when Martin would not be able to turn in bed and therefore, he needed a hospital bed with a good adjusting pressure mattress. The bed also needed be electric so that it would be easy to adjust it using a pendant control since this would reduce pain sores as well as make him less of a bother to his family. In this, I failed because I felt that since the parents were mere peasants, giving them such information would be disturbing them as they would not afford the hospital bed or the special mattress.
Informing his family on his sickness and teach them on how to take care of him
I was tasked with this as the physiotherapist and I did my best in informing them of the condition. It was however hard for them to accept that there was no treatment and that the calcium supplements they were giving the boy were useless.
Preparing the family of his inevitable departure
The visiting medics said that people with Duchenne muscular dystrophy rarely live to their 30s. It was another herculean task informing the family about this and I was viewed as a prophet of doom. They however gradually came to accept this as Martin continually lost use of his vital muscles.
Death by bed entrapment
On May 16th 2010, the inevitable happened. When Martin’s mother was going to wake him up from his bed in the morning, he found that the body had breathed his last. Martin had gotten entrapped on his bed between the mattress edge and the headboard. In trying to get himself out, he became completely entangled and could not move. Breathing became harder and harder. He was not able to call out for help.
He died from suffocation.
Had they known about FDA bed entrapment assessment, the family would have gotten the boy a cheap mattress extender block so as to fill the gap between the mattress edge and the headboard. This would have prevented Martin from the entrapment and eventual suffocation.
Though Martin’s death was inevitable (his diaphragm and rib cage muscles would have bowed down and collapsed soon anyway) I found blaming myself through and through for not informing the charity centre of the need for a hospital bed for the boy. I however realized my mistake when it was too late. When I realized it, I had a meeting with the administrator of the organization so that hospital beds could be procured for all the patients who direly needed them.