[tri-wings] Re: Barb

Bravo Barb,
I wholeheartedly agree. My very small survey and research paper on the subject 
of the implications of medical decision making when faced with the diagnosis of 
a fatal disorder, where there are in fact some survivors- exactly confirmed 
what you said. Every single respondent found meaning, growth, insight, benefit 
and value no matter how much or how little time they had with their child, or 
are still having. What was also extremely interesting to me, was how each of 
the respondents, when asked how they would define a fatal disorder, had 
extremely different explanations and understanding. Even more interesting was 
that the majority did not consider the full T13 or full T18 actually fatal. In 
most cases, the expression of the genotype or in other words, the actual 
medical problems that resulted from the extra genetic material, were blamed, as 
they should be. So, my conclusing was how can one truly make effective, 
informed decisions when the explanation of, understanding of, and r
 esults of the extra chromosome are so varied. 

I cannot tell you how many times I have heard from families whose doctors tell 
them that because the extra chromosome is in every cell, their child will die 
and there is no escaping it. What is funny about this explanation is that every 
gene is in every cell of everyone's body. The genes themselves are either 
actively producing proteins, or not. If the extra chromosome caused errors in 
every cell of the body, no system would be normal, from the top of the head 
down to the little baby toenail. How the error manifests itself, its 
phenotypical presentation, is so varied, there is no consensus and you can 
compare one child to another and see many, many, many differences, just like a 
child without the extra genetic material. To me it is like saying a person with 
the breast cancer gene should just plan to die of breast cancer, but we all 
know that is not true. There are so many factors, as yet undiscovered, involved 
in the manifestation of our instructions within our genes, encased
  in our chromosomes that the possibilities are endless. 

Which is exactly my point, each of our children on this list have died, but 
each one of them still had endless possibilities. What is missing in the care 
of our children is the recognition of that fact and the realization of that 
process. Only then will our children be treated appropriately, and for me 
anyway, only then will the value of our children be truly appreciated by 
others, besides ourselves. 

Soap box off now, 
thanks for listening,
Bess


-----Original Message-----
From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
To: tri-wings@xxxxxxxxxxxxx
Sent: Mon, 11 Aug 2008 5:58 pm
Subject: [tri-wings] Re: Barb



Demi,
I have suggested that when parents decide that they want to give their unborn 
baby a chance.....given the situation once they are born, that it might help if 
it is recommended that such parents spend some time volunteering for respite 
care or spend time at a home for kids with development issues. This would help 
to convince the staff that the parents are fully cognizant of the challenges 
that lay ahead and that they are making a fully informed decision. 

There was no interest in this suggestion.

I have heard of stories where people want life saving treatment and then they 
stop visiting the baby over time. Let's face it, it is not easy. It is 
demanding 
and consuming but the rewards are very great. Most people don't understand.

Have you ever heard of Jean Vanier? He developed homes for people with  serious 
developmental delays. They are all over the world. Jean Vanier believes that 
the 
God lives within these people in a special way and those who take the time to 
know and love them see that. Once I met a very religious professor and he told 
me that he used to go to a home for an hour once or twice a week and he would 
just hold the hand for that hour of a man who lay out on a stretcher. He 
couldn't do much.  When he told me that, I took a breath with the plan to say 
something like, "You are very kind to do that" but before I got it out, he 
said, 
"he did so much for me." I realized that I wasn't getting it. It is not so much 
what we do for these special lives, it is what they do for us when we love and 
care for them. 

What a terrible world it would be when others make decisions for us about who 
is 
worthy of living and who is not. 

On the one hand, what happened to Annie is neither here nor there. We do not 
know if she would still be alive and I am sure that many people (especially at 
the hospital) think we are making a big deal about nothing. On the other hand, 
the covert removal of our rights, and the denial of our ability to provide 
input 
or even be aware of our daughter's plan of t
reatment is very significant in 
terms of the implications. 

I often wonder what it would be like back in the old days if a mother make a 
big 
deal about her child being sterilized without consent because she had 
developmental disabilities. Imagine if that mother said, "Do you know where 
this 
lack of consent and unilateral judgment could lead? On the one hand, people 
would have looked at her daughter and wondered what kind of a mother she would 
make,and dismissed the mother's concerns but on the other hand, in the bigger 
picture, we know that a mother who fought the issue would have been completely 
correct.

Funny how we have such strict sterilization laws and yet eugenics continues 
silently thru genetic testing. Who are we fooling?

I do believe that policies and protocols developed on the basis of  genetic 
test 
results only are completely discriminatory. It is no different than having such 
plans related to a person's age. The fact is that some 85 year olds are dead 
and 
some are running marathons. Everyone is unique 
and every family makes the decisions that are right for them.

Barb




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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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