Consciousness in Children without Cerebral Cortex

I got an interesting letter from the grandmother of a child with hydranencephaly (reproduced by permission):

Mr. Piccinini,

Your response to Dr. Merker’s paper, Consciousness without a Cerebral
Cortex: A Challenge for Neuroscience and Medicine
, was educational and
disappointing.  I appreciated the evaluation of phenomenal versus
creature consciousness and the application of state consciousness;
however I believe you ignored reality.

My vocation is computer engineering; my avocation was raising a child
with hydranencephaly to the age of 4.  Please be aware that these
congenitally decorticate children are the sole reason that Dr. Merker’s
theories must be discussed.  These children do more than exist in a
non-REM or coma state.  They function with a unique awareness of the
world around them.  Can they fully comprehend their environment, no; do
they respond to sensory stimulation, yes.  These responses are absolute
proof of state transition and voluntary control.

I ask that you consider state consciousness from opposing directions.
Transition from a fully-cognitive state to a non-REM, as in a brain
injury; and the anencepahlic state.   There must be a physiological
restructuring or opportunity that occurs in children with
hydranencephaly that permits them to reprogram or utilize the brain stem
for consciousness.  There must be a difference between having
established cerebral connections that are damaged and lost; and never
having these paths.

I am not able to discuss eloquently neurological theory; however, I am
able to journal the life of an amazing 4 year old, with no
cerebral [she presumably meant cortical] tissue and impaired mid-brain functionality; who learned to say 2 words, who learned to color, learned to communicate, and demonstrated love.
How can any of these deliberate developmental actions exist without
acknowledgement that conscious experience can be focused from the brain
stem?  And more importantly, how can emotion exist without
consciousness?

Did Dr. Merker prove his theories? I don’t know.  Do hundreds of
anencephalic children live everyday with a conscious awareness of their
environment? Yes.

Diana K. Wrisley
Senior Staff Engineer, Lockheed Martin
Proud Grandmother of Kirsten Anne (08-05-02 to 11-17-06)

5 Comments

  1. Part of the problem is that consciousness is multiply ambiguous. If access consciousness can occur in the absence of phenomenal consicousness, then response to the environment and voluntary control are not proof of phenomenal consciousness. They may not even be evidence for phenomenal consciousness. There are several things that need to be done: develop accounts of the relationship between responses, of various kinds, and different kinds of consciousness, and also develop accounts of the kinds of consciousness that underlie moral considerability and value. My guess is that different kinds of consciousness matter for different kinds of considerability: phenomenal consciousness is sufficient to be a moral patient, access consciousness is necessary to be a moral agent and a person.

  2. I am the parent of a child with Hydranencephaly who lived 11 1/2 years and was very much concious and aware. I have no numbers or concrete proof of that. Just lots of pictures and experiences. Her pictures and story can be seen at: https://kaydamarie.memory-of.com/about.aspx

    However I’m not writing to promote my daughter. I just want to clarify that Bjorn Merker’s article and this discussion relates to children with Hydranencephaly, not Anencephaly. It is a very different condition and has a very different outcome.

    Thank you for discussing this issue and keeping it current.

    Barb, mom to Kayda (12/2/88-6/23/00)

  3. Dee Dee

    Hi. I to had a daughter with Hydranencepahly. She only had very little Gray Matter and very little Thalimus. She sensed everything around her and her surroundings. She has had several MRI’s to show that no function in her brain was present. She lived to be 17.5 years old. These children can do miraculous things in their life. Vision, Hearing, Mobility are their weak points however, their ability to Love, Hope and show emotion is superb. They steal your heart and give you hope and compassion. So if not having a brain means they are vegetables, then someone needs to regroup themselves and really study Hydranencephaly. No one person knows about the brain and no one will ever do that. Just learn to have compassion, care and Love for all these children and you will see a difference they make in your life. They attend Special Schools and the parents learn all about their child on a daily basis. Parents are the best resource for information baout Hydranencephaly and any Neurologist will tell you this.

  4. Gary

    I wonder if anyone here is familair with the remarkable findings of British pediatrician John Lorber on the 1970’s of normal young adults with virtually no brains, a result of childhood hydrocephalus. This is discussed in: Lewin, R. (1980). Is your brain really necessary? Science, 210, 1232-1234 and in a video with the same title.

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