Responding to a New Diagnosis
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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.
A mother’s need to get as much information as possible; while the pediatrician may be protecting against too much.
In the early scary days, with shock of diagnosis, parents don’t register the supportive resources they are handed.
Moving beyond the anger after the death: “At diagnosis and birth, hope and faith took over. I didn’t realize how sick she was.”
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.”
When the genetic condition is VERY rare and the delivered prognosis is very vague.
A genetic diagnosis: I had to get over the guilt of feeling “is this my fault?”
I wanted to be strong for her but there were plenty of things that I screamed my head off in my car.
The early months post-diagnosis: grief, therapy, identity
Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life
Marfan Syndrome: He had 26 doctors and specialists and therapists. It was a free-for-all.
The Shock of learning the diagnosis
It’s really entering a whole new culture.
A New Diagnosis: Finding Your Bearings
Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.
People manage their feelings very differently.
Talking About the Prognosis - Parents and Providers
There is a variety of responses.
Our first child's fatal diagnosis, with a new pregnancy at same time.
I’m like, I don’t need a bucket list right now.
Creating a safe place for each person to express their feelings.
SMA ran in the family, and then it hit us in the face.
I wish there had been more support and fewer decisions at the beginning.
There’s a fine line between hope and acceptance.
Fundraising for Research: I was transported to Ben’s Future and I wasn’t ready for it
Families aren't ready for all the information at the beginning.
The doctor was very gentle and also clear that there was no treatment at this time.
How is this my life?
We came to the realization that this is the path we’re walking and there is nothing to be done about that.
There will be more. Don’t live your life dwelling.
Chaplain: “When this happens to me, to my child, Now What?”
SW: Guilt is natural
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- December 28th
- Am I Drowning or Floating?
- The Miracle at the Mirror
- Really, Did You Just Ask Me That?
- Running the Falmouth Road Race (virtually) for CPN: A Family and Pediatric Provider Affair
- Fulfillment in THIS Motherhood
- What can parents handle? The truth (delivered with care).
- Another Child? A Mom's Odyssey.
- I Belong to A Club
- D-Day #1: Anniversary of Diagnosis Day
- Our daughter's story was in our hands.
- Awareness Goggles—Not exactly Google Glass
- I don't know how you do it?!
- Three ingredients for the best Care Formula ever
- Country
- Surrender