Please read the response to my letter from unnamed doctor & you’ll see why we need to keep writing letters when our children were labeled & given no hope.
Dear Ms. Murphy,
First of all, I would like to say how very sorry I am for my role in the distress you have gone through. Let me also thank you for your willingness & honesty to write to me of this & for letting me know how Sajjona is doing. She is beautiful & really looks &
sounds to be a wonderful little girl.
I have read your descriptive & thoughtful letter many times now & thought a lot on how I can best learn from what you tell me. Clearly, I did not communicate well. Though it may not have seemed to be the case, it is something that I do worry
& think about a lot. I try to be mindful that how I, as a doctor, talk to people has consequences. My goal is to be as supportive as possible rather than to add to the trauma. It is much to my regret that this was not the case.
I will admit that I am a bit perplexed regarding
how I spoke with you. It is not my nature to be certain & I could not agree more with you that I am no more able to look into the future than anyone else. Indeed I have been trying, for many years, to publish a case of another girl with trisomy 18 who is doing significantly
better than the literature reports, in order to let people know that there is a spectrum. I am also especially concerned by the message you perceived from us that she would be "nothing but a vegetable". I view no child in this manner, no matter how incapacitated they are - they
are human beings & I feel much angst at the pain and distress that disorders can bring to some - it is inconceivable to me to ever reference a child in such a manner - the fact is that I truly admire the children (& their families) that I meet & who are not just coping, but
prevailing despite adversity. It is a part of your letter that particularly touched me & which I need to reflect more on in order to avoid such a thought ever occurring in the future.
In regards to your request, as a part of changing the dialogue, if you provide me permission,
I would like to tell of Sajjona's capabilities (de-identified of course) in future situations as a real life example of potential. I recognize that it does not take away the hurt that I inadvertently have caused you & your family but hope that I can in some way lesson that. In
relation to this, I would welcome the opportunity to meet with you, listen & talk more &, maybe even have a chance to say hello to Sajjona.
Again, my deepest apologies
Yours very sincerely #SimonsLaw
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With fair care, appropriate interventions, and the right treatment, amazing things can happen!
"Look at me now PCH! I guess I wasn't at the end of my rope after all, huh? I really wish I could show you guys how tough I am, and how well I'm doing now. How's this for
'QuAlItY oF LifE?' I don't know about you, but my life is filled with so much fun, and people that love me. I'm nearly walking all by my self. I'm starting to like food. And, guess what? I'm off ventilator almost all day!
Thank you to Boston for believing in me and valuing
my life enough to save it. 365 days ago I was discharged from the hospital, after being inpatient for 5 months, at 3 different hospitals, in 3 different states, including one 16-hour heart and airway surgery. Because of Boston Children’s, I am able to breathe so much better.