Ashley and Theron
Ashley and Theron, parents of, Rosa (8), Leo (5), and Viggo.
Viggo was diagnosed with Trisomy 5p shortly after birth and died at age 6 months.
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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.”
When the genetic condition is VERY rare and the delivered prognosis is very vague.
NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”
There was a lot of veiled language around these decisions. What does ‘goals’ even mean? We had to find other parents to get a sense of what to expect.
