Monday, February 8, 2010

I wish to address, in this post, the issue of Ashley's level of cognition and how it relates to g.a. This is with reference to this previous post where Sara Goering remarks about discussions she had with parents where they "shared stories of how their children had matured in multiple ways...despite the official medical prognosis that they would remain at the cognitive level of a 6-month-old."

I go into some detail about cognition and its relevance to the valuation of human life here. At this juncture, I am more interested in talking about the certainty with which doctors make their prognoses about the cognitive level of children with severe, multiple physical challenges.

In the AJOB rejoinder "Growth Attenuation: Good Intentions, Bad Decision by Adrienne Asch and Anna Stubblefield, (AJOB 10(1):46-48, 2010), you can read the following:

Diekema and Fost's calculations underestimate the risk that Ashley may be more self-aware than they presume. When a child does not have access to a means of verbal communication and when her mobilty is severely impaired such that she may not be able to point clearly or manipulate objects, it is impossible to accurately determine her cognitive abilities. (p.47)

Precisely. More damning is the fact that both Fost and Diekema feel that g.a. would be inappropriate for children with "normal" cognitive function.

Diekema and Fost do not recommend growth attenuation for non-ambulatory children with typical cognitive development because, for these children the benefits would be outweighed by psychosocial disadvantages. (p.47) Fost and Diekema would not do g.a. on a child with "normal" (or one could assume fairly "high") cognitive abilities but they insist that they are absolutely correct in theirs and others' assessment of Ashley's abilities:

We concede that certainty can never be achieved in medicine, but the issue about which they are concerned is not in dispute among any of the professionals who have evaluated Ashley. (Ashley Revisited: A Response to the Peer Commentaries, AJOB, 10(1): W4-W6, 2010, p.W4)

This said in spite of the fact that there's a fairly long history of underestimating the cognitive abilities of disabled people in general (which Asch and Stubblefield point out on p.47).

The arrogance of this position is mind-boggling. It is logically untenable. If an individual cannot willfully move themselves, it is impossible for them to communicate their cognitive abilities. Furthermore, the concept of cognition as static and never open to change or growth is equally nonsensical (consider the most recent developments in neuroplasticity). Brain scans are unreliable methods of assessing cognition as well. This I know from personal experience. Consider the fact that, based on my daughter's MRI results taken in the first hours after her stroke, the technician's report was to "harvest her organs". Consider the fact that a number of neurosurgeons and a neurologist...those wonderful experts...asserted that my daughter was brain dead. Consider the fact that, just under 10 years later (and obviously still alive), with CT scans that show her frontal lobe is fundamentally dead, my daughter is able to talk, write, read and respond fully to her environment. What of those expert opinions?

Of course, the fact of the matter is that, cognition or no cognition, g.a. is wrong, and Asch and Stubblefield say as much. Given the fact that the two good doctors oppose g.a. for normally cognitive children, however, and given the fact that individuals more qualified than they are have made serious errors in their assessments of cognition in the distant and recent past, g.a. shouldn't be carried out especially on children like Ashley. The margin of error is too great.


  1. Just playing devils' advocate...Ashley will remain in her current state for life...can you not consider the fact that years down the road the g.a. may have had some benefits? You cannot compare someone like Anne McDonald (who was NEGLECTED and became capable of communicating when someone tried to break through) with Ashley. You can be sure her parents love her and have tried many therapies for her to facilitate communication. Anyway, g.a. only alters her physical size, if her brain has the capacity to develop further (unlikely) that will not be hampered by the g.a. It is a sad but true reality that some kids like Ashley suffer more as the effects of gravity take their toll (contractures, spinal curvatures etc) and if g.a. can alleviate some of that, it may be used in SELECTED CIRCUMSTANCES. Nobody is suggesting that every single person with a cognitive disability be subjected to g.a. However if you had to watch a child born with severe brain damage grow, develop severe contractures, joint dislocations, undergo surgeries of minimal benefit and suffer severe pain I can see how the option of g.a. could be considered. Often the small children do not have as much trouble with the contractures and dislocations but these become more severe as the body grows. I think that is where the doctors are coming from and I'm sure that's how Ashley's parents saw it as well.

  2. Hey Anonymous...thanks for your comment. It's excellent. I think that there are doctors out there who are genuinely caring and considerate when it comes to wanting to do what's best for the kids involved. I am not as certain about Fost and Diekema's motivations, however, as their handling of the situation...particularly with the written work they have done...was sloppy and supremely arrogant in tone. If you read the post a couple of posts back, you see that Fost calls cognitively disabled adults "freaks" (and he never specifies their physical status...). Fost is Diekema's mentor and I'm sure you've heard the expression, "the fish rots from the head".

    The issue as to what *might* happen to a child that grows up is exactly that it is speculative in nature. My own daughter is actually lighter than Ashley...and she (my girl) is only 5 feet tall. She will not likely grow much more. She has severe scoliosis, drop foot, contractures..the whole 9 yards. Ashley herself has a fairly significant scoliosis, a little guy I know had severe scoliosis by the time he was only 9 and they did the surgery then. On the other hand, Dream Mom's big guy (180lbs) seems to be relatively free of some of those issues...or mildly has them. Furthermore, by her own admission, he's never had bed sores *under her care*. As a matter of fact, he developed problems in hospital. It's the quality of care that matters, not the size of the individual receiving it. Issues of spasticity and just tone in general also have to come into play in these situations. Nothing is for certain.

    I cannot deny that Ashley's parents love her, but their relentless advertising of the "treatment" I find abhorrent. Had they done what they did and shut up...I'd have nothing to write about. Furthermore, just because they love her, doesn't mean they don't make mistakes...or lack perspective.

    Finally, I am not as confident as you are as to the selection process for who will be "allowed" to get g.a. or not. I think money and influence can play a huge role in these things and not all people, as you can imagine, have the best of intentions in mind. I also find it is a very dangerous road to be on when we start using cognitive ability as a bench mark for how we deal with disabled individuals.

    Again, I thank you for your excellent comment.

  3. I just found your blog. I have not read the entirety of it but look forward to doing so. I just lost my disabled brother in July- he was 26: just shy of turning 27 in September, my heart and my Families hearts have been completely broken. Thank You for whatever it is you are doing, am now following your blog and I cannot wait to read your blog further.