Responding to a New Diagnosis

The Shock of learning the diagnosis
A collection of parents talk about the shock, guilt, denial, the pit.
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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.”

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

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

People manage their feelings very differently.

Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.

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.

Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life

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?”
