More than a medical record

There used to be a way to tell how sick a patient was by the size of their paper chart. Now that records are electronic, it is not that obvious, although I’ve been told that accessing my 14-year-old son’s record takes a while to download. That’s understandable since with a rare, complex chromosome disorder and the sheer volume of medical intervention he has needed in his short life.

But in reality, with his electronic records, you can read how all his organs work, his severe level of intellectual disability, and the various medical equipment he needs every day. You can paint a picture of who he is and what his life is like without ever seeing him in person.

I should mention that with 32 medical conditions and being followed by 13 providers who all seem to have their own medical charting systems (which apparently do not talk to other charting systems), I am pretty confident in saying that a complete medical record doesn’t even exist. (My tip to you: also keep and maintain your own record system process.)

This picture that you can envision by reading a record may lead you to think that this is a child living a miserable life. He is suffering or in pain. The thoughts among the majority of nondisabled persons are that physical or intellectual disability equals suffering. I can tell you for sure that upon meeting my son, the term suffering would be at the bottom of any list of words that came to mind.

He is the opposite of suffering. I have personally diagnosed him with profound happiness. Is that a medical term?  He has emotions of sadness and anger like everyone else, but overall he is happy and when he is around you, it is difficult to not smile.

This, unfortunately, is not in the record. Neither is the fact that he is Barney’s No. 1 fan, he does not like stickers, the best place for an IV is his the left hand, he can tolerate almost every medical procedure if you talk him through it, he is most protective of his eyes so any eye exam takes the most patience, he will not put on his orthotics until his socks are completely smooth, and so on.

I could go on and on with things that make him who he is, and we all have unique traits that define who we are. Being put into a grouping of disability or chronic disease categories doesn’t define who you are. The medical record does not tell you everything, nor is that its purpose, I know.

Don’t misunderstand what I am saying. The medical record is of vital importance. It just doesn’t give you the complete picture.

What have you experienced with your own children’s health records?

Melissa Winger is a member of Children’s Family Advisory Council. Read more about Melissa.

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