Responding to a New Diagnosis
![The Shock of learning the diagnosis](https://i.ytimg.com/vi/blrEwLfIgQA/maxresdefault.jpg)
The Shock of learning the diagnosis
A collection of parents talk about the shock, guilt, denial, the pit.
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A diagnosis in-utero of Trisomy 18: Being told, Don’t get too attached. He is going to die. We wanted a different conversation.
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A mother’s need to get as much information as possible; while the pediatrician may be protecting against too much.
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In the early scary days, with shock of diagnosis, parents don’t register the supportive resources they are handed.
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Moving beyond the anger after the death: “At diagnosis and birth, hope and faith took over. I didn’t realize how sick she was.”
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A poor diagnosis in the NICU, delivered poorly: “They were trying to give us hope. But they hadn't yet delivered the news that we were in a hopeless situation.”
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When the genetic condition is VERY rare and the delivered prognosis is very vague.
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A genetic diagnosis: I had to get over the guilt of feeling “is this my fault?”
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I wanted to be strong for her but there were plenty of things that I screamed my head off in my car.
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The early months post-diagnosis: grief, therapy, identity
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Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life
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Marfan Syndrome: He had 26 doctors and specialists and therapists. It was a free-for-all.
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The Shock of learning the diagnosis
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It’s really entering a whole new culture.
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A New Diagnosis: Finding Your Bearings
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Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.
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People manage their feelings very differently.
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Talking About the Prognosis - Parents and Providers
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There is a variety of responses.
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Our first child's fatal diagnosis, with a new pregnancy at same time.
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I’m like, I don’t need a bucket list right now.
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Creating a safe place for each person to express their feelings.
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SMA ran in the family, and then it hit us in the face.
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I wish there had been more support and fewer decisions at the beginning.
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There’s a fine line between hope and acceptance.
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Fundraising for Research: I was transported to Ben’s Future and I wasn’t ready for it
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Families aren't ready for all the information at the beginning.
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The doctor was very gentle and also clear that there was no treatment at this time.
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How is this my life?
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We came to the realization that this is the path we’re walking and there is nothing to be done about that.
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There will be more. Don’t live your life dwelling.
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Chaplain: “When this happens to me, to my child, Now What?”
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SW: Guilt is natural
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