Last evening I heard from Jack, a man with revenge on his mind. Sadly, Jack’s focus on making sure someone “pays” has moved the real problem, and the person who needs his help the most, to the back seat. It’s a bad situation, and it just breaks my heart.
Jack has a six-year-old son, Max. Two weeks prior to Max’s birth, his mother was diagnosed with a strep infection. When Max was born, he seemed normal and neither the doctors, nor the family were aware of any problems. But within months it became apparent that problems were many. Eventually, bloodwork was done, later a biopsy, and Max was diagnosed with muscular dystrophy.
Jack thinks the hospital, or the obstetrician, or both are at fault for Max’s disabilities. He is doing whatever he can do — afford to do — to prove that point. And that’s why he contacted me — to help him prove that point.
He wants them to pay.
I chatted with Jack for a little while. I asked about the diagnosis, and Jack was unclear about it. He tried to get the Mayo Clinic to study Max, for free, but the Mayo Clinic wasn’t interested. They wanted thousands of dollars to do a workup, and Jack doesn’t have that kind of money. It’s clear there is a dystrophy of some sort, but Jack thinks the diagnosis may be wrong. He couldn’t say why except that one doctor, thousands of miles from where Jack lives, said the biopsy slides are fuzzy.
I asked about the differences in dystrophies. Would they necessarily be treated differently? Could it just be a question of genetics? Jack didn’t know.
I asked Jack about the birth. He mentioned the strep B infection his wife had, but kept insisting that his son was normal at birth. I looked up Strep B after we got off the phone. Birth defects are rare, but possible.
I asked about Max’s well-being — is he in school? Is he progressing? But I realized after about the third question that the conversation about Max’s life was being deflected in each case — always to who wouldn’t help and who wasn’t providing the “right” information to Jack.
My eureka moment came when I tried to suggest to Jack that he needed to be contacting the Muscular Dystrophy Association and others who might provide help — and realized that wasn’t the purpose of the call. In fact, Jack’s interest is less about his son, and more about the blame.
I won’t pass judgment on Jack. I can’t imagine having a child with a very difficult disability, and thinking that it might have been the result of a medical mistake at birth.
What bothered me the most was that Jack was so intently focused on the money he might get if he could prove blame — at the expense of his son’s current well-being. If he could only focus some of that intense energy on helping his son grow, and perhaps even thrive, despite his disabilities….
As Every Patient’s Advocate, I get frustrated because sometimes I just can’t help. I don’t have the knowledge or the means or the resources for special cases like this. Not that I can’t provide resources — I can — but not when there is an ulterior motive.
And — I can plead for priorities — as I did with Jack. I asked him not to let go of his fight because someday it may prove to be the right thing to do. But I tried to redirect the fight into something positive for Max. I asked Jack to reprioritize where the bulk of his energy needs to be.
Jack seemed uninterested. I wasn’t able to give him the answers he was looking for. He was pleasant and thanked me, but I could tell it fell on deaf ears.
Blame zaps us and subtracts from the positives. Refocusing that blaming energy can be incredibly cathartic. Max deserves that from his dad.
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The MDA won’t see Max unless his parents have a diagnosis from a neurologist saying that Max has some type of dystrophy. The MDA is a fantastic organization though and will most likely help in some way such as suggest a pediatric neurologist that deals with dystrophies.
I know I’m not commenting of the real “gist” of your post but maybe when Max’s dad wants to find help instead of money this will be important information for him.
Connie — you make a good point. The diagnosis must be made to get the help they need.
Max does have that diagnosis, and all the testing and paperwork that goes along with it, according to his father. But his father is trying to prove that it is a different form of dystrophy than the original diagnosis. Someone told him he would have a better case for proving it was the doctor’s fault.
Jack is aware that he can be helped by the MDA. He’s just putting his efforts elsewhere right now. Sad, but true.
Thanks for posting.
Trisha
I’m a former Health Care Services Coordinator for MDA. Max doesn’t need a firm diagnosis to be seen at an MDA clinic, just a referral from a doctor stating that the doctor suspects Max may have one of the diseases in MDA’s program. Part of MDA’s clinic program is to help people get a diagnosis. Sometimes it turns out a person doesn’t have a form of MD, and so won’t qualify for continued services, but at least they will have another piece of the puzzle when it comes to figuring out what’s really happening. The doctors at the MDA clinic are specialists, and will be able to pinpoint what type of muscular dystrophy Max has, if indeed Max has a neuromuscular disorder.
But, as the other posters pointed out, that isn’t really the issue for Max’s dad. I just wanted to be sure that everyone knows that they don’t have to have a diagnosis before they can be helped by MDA.
Kara — great input. Thanks so much.
When my son was diagnosed with DMD at 3, I went through the stages of grief. A few months of denial, then a year or two or three of anger. Since there is family history on my wife’s side of DMD, my anger focused on her. I don’t think I ever mentioned that to her, but it was simmering in the background. Not healthy. Totally irrational. Eventually I had my ‘aha’ moment and came to peace.
In grief, the anger is going to have some focus, whether it is God, man, or even the child. It helped me to realize that is was a phase of grief and would pass. This situation sounds more severe, and all I can think to do would be to explain the grieving process and recommend counseling.