What’s in a diagnosis?

First, some pictures of Nathan with cousins Matias and Claudia, taken on Saturday night:

I’m waiting for my cousin to send me the rest of the pictures that we took in Buenos Aires.

Today I wanted to talk about a diagnosis. Some days ago, in my Mission Impossible post, I wondered if maybe the fact that Nathan had so many diagnosis and so many different levels of damage to his brain meant that his capacity for growth and development was limited.

During therapy today Ramon and I were talking and he mentioned that Nathan is currently his “toughest” case – all of the other kids he’s seeing and has seen in the last couple of months have shown more progress than Nathan. So I asked him if he thought it was possibly because of all of Nathan’s diagnoses – Holoprosencephaly, Hydrocephalus, Bacterial Meningitis, Polymicrogiria, etc. He gave me a very interesting answer.

He told me that he has seen children that have a perfect MRI and perfect everything – who have progressed less than Nathan. Other children he’s seen that have atrocious looking brains – whom he’s gotten walking. He learned many years ago NEVER to judge a child by what their brain looks or by how much damage they have. Diagnosis means nothing in Ramon’s world.

What matters is the child himself. Does this child’s brain respond to the treatment? What is this child’s rate of improvement? Based on these factors, he determines whether he can help these children or not.

Which is almost exactly what my cousin, who is a very reputable anesthesiologist in Buenos Aires, told me when we talked about Nathan. She looked at his latest MRI scans and told me that the brain that she was seeing looked like that of a vegetative, non-functional child. The fact that Nathan is who he is today shows that his brain is incredibly flexible and able to adapt. She told me to KEEP MOVING FORWARD and continue stimulating and she believes he has a lot of potential.

I wanted to share this today because it’s very easy for us as mothers to allow a diagnosis to determine our expectations of our children. It’s easy to believe that because their brain looks a certain way that we can only expect certain things of them. Today I learned that this is a complete fallacy. Today I learned to not dwell on a diagnosis and simply to look at a child’s potential because of the adaptability of the human brain.

What’s in a diagnosis? Limitations. If we see beyond our kid’s diagnosis, we can see potential.


  1. I agree! The doctor who gave Little Man his first EEG said that his brainwaves were not normal, but looking at him, he is normal.
    He also said that he has seen some scans of children that should be walking & talking, etc & cannot yet some kids whose brains “are garbage” when you look at them on paper & when you meet them they are walking & talking. He continues to say look at the child, not the paperwork that comes with him:)

  2. ¡¡¡¡toda la razón!!!!los diagnósticos nos asustan mucho,e incluso aveces esperamos lo peor,pero cuándo pasa el tiempo nos damos cuenta que el niño puede avanzar mas que el diagnóstico,y es ahi cuándo trabajamos el potencial,y creo que Nathan tiene bastante…..solo darle el tiempo que él nesecita(para Dios no hay casos dificiles),un grán abrazo.

  3. Uhm… Where have I heard that before? =D I’m glad Ramon has that opinion and that you hear him 🙂

    Especialmente cuando se trata del cerebro, los diagnósticos no significan nada.

  4. I agree. We have heard the same from some members of Team Emma – the images/scans of the brain don’t mean too much. Look at the child in front of you more than the images on the screen as the child will tell you the true story.

    Glad things are turning around for you and you are feeling better!

  5. This is awesome!

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