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  • kelly-miller

    February 14, 2019 at 2:45 pm

    So as I read this article, I have gone thru a gamut of emotions. My heart breaks for the mother as she found out her 20-month-old has SMA. I can only imagine what it must feel like to be given this news about your seemingly healthy child. How awful to hear, without much thought put into it, oh by the way, your child is probably going to die sooner rather than later.

    The other emotion I felt was anger. Primarily, anger at the doctors and the way they approach giving these diagnoses. This isn’t the first time I’ve heard the same depiction of a doctor’s announcement to a parent. To be suddenly told that your child has a life-threatening, debilitating disease is blindsiding enough, but to also be told in the same sitting that your child may die prematurely, or that he will never walk, seems a bit cruel to me. I feel like information can be given in doses. Giving them the basics of SMA (and this was type II, not I), like what it does to the nerves & the muscles as well as care needed to keep from getting pneumonias, would be enough to handle in that 1st conversation without having to go into what happens down the road yet. Besides, with Spinraza, it’s possible that this toddler would have a chance to at least walk for a little while with assistance.

    I’m not talking about giving parents false hope. I’m talking about not destroying them at that 1st discussion about their child’s disease. Why not wait until the next appt to explain some of the possible things that will happen? Why not introduce the parents to some older kids, teenagers, and adults who have been living with SMA and accomplished things already? I think it would help them much more to see how much their child will be able to do instead of telling them what he might not be able to do. Why not have a little compassion?

    • kevin-schaefer

      February 15, 2019 at 4:31 pm

      Kelly, I know exactly what you mean. In this day and age especially, it’s crazy how there are still doctors who basically declare SMA as a death sentence. They should be comforting parents by talking with them about the huge advancements in SMA research, and how there are so many adults with SMA like you and me who are living our lives. Thanks for sharing your perspective.

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