Doctors generally leave out the details on hydranencephaly, such as which areas of the brain are affected or what the affected areas of the brain mean for the child. That is good and bad. Bad because it turns out that even the formal diagnosis of hydranencephaly is avoided, simply stated as:
"Your child does not have a brain. They are surviving on only their brainstem which controls involuntary functions such as breathing, blinking, and some reflexive-like movements. They will live for a little while in a persistent vegetative state."
(that's usually followed up by some unethical opinion of what the parents should now do for their child, which is generally not much)
Good because when doctors leave out those details, they are not placing inaccurate expectations for the child's life (or more likely, adding to that long list of impossibilities that come along with diagnosis).
You may have heard of PVS during the case of Terri Schiavo, the woman who experienced a heart attack-like episode in 1990 and went in to a coma which later was deemed a persistent vegetative state. There was a battle between her family & her husband whether to remove necessary equipment such as her feeding tube. The government was involved and eventually she passed away due to dehydration after more than 13 days without nutrition or hydration in 2005. This case happened years before I myself embarked on this journey with hydranencephaly, but it had a huge impact on me. You can learn more and support the foundation, which is working to change the misconceptions that surround a diagnosis of PVS, in her name here: Terri Shiavo Life & Hope Network
The truth is, our kids living with hydranencephaly are not in this state of awareness. Some defined symptoms of PVS include:
and if you have a little one with hydranencephaly in your life, you know that these symptoms are not accurate descriptions of the child.
This is quite the controversial topic, and while I have my personal views on the diagnosis itself, it is a difficult fog of a condition to navigate. Misdiagnosis is not uncommon since it is difficult to evaluate activity within the brain, even with advances in imaging technology such as functional MRI and PET scans. And the determination of level of consciousness, along with brain function and response, is next to impossible.
However, it is without a doubt that the phrase persistent vegetative state is not one that should be used to define children with hydranencephaly.