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.
![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.”](https://i.ytimg.com/vi/QQk7Bca0xhc/sddefault.jpg)
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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![](https://i.ytimg.com/vi/QQk7Bca0xhc/hqdefault.jpg)
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.”
![](https://i.ytimg.com/vi/0r6tXSKFIiM/hqdefault.jpg)
When the genetic condition is VERY rare and the delivered prognosis is very vague.
![](https://i.ytimg.com/vi/BBRRMmJvNSQ/hqdefault.jpg)
NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”
![](https://i.ytimg.com/vi/avQGe7achk8/hqdefault.jpg)
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.
![](https://i.ytimg.com/vi/WiQJKmLxdbQ/hqdefault.jpg)
A Rare Diagnosis: “I knew he wasn’t going to be the exception . . . I had to connect the dots. No one else did that for me. But then on the backside, clinicians said, I would have made the same decision.”
![](https://i.ytimg.com/vi/pjkp2O6AOG8/hqdefault.jpg)
“I wish palliative care had arrived three weeks earlier… It was such a relief.”
![](https://i.ytimg.com/vi/F1aZ21GK0bQ/hqdefault.jpg)
Avoiding a traumatic medical death: Learning our baby could not tolerate intubation and deciding he would not have it again.
![](https://i.ytimg.com/vi/3lskDTij76o/hqdefault.jpg)
Regret re decision-making about interventions: “If we as parents center our child’s experience [not our fear of guilt], with every choice, I don’t see how we can go wrong.”
![](https://i.ytimg.com/vi/dR02hGlyvBI/hqdefault.jpg)
Communicating with the siblings: What can we do to make this as less traumatic as possible, to minimize damage.
![](https://i.ytimg.com/vi/MKzlUZYGReA/hqdefault.jpg)