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Ideal_Rock
- Joined
- Aug 15, 2004
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Hi Lisa. Glad you came back for more!! I'm not surprised most of your experience has been with shocked parents, because at birth that is the most common state! Giving birth to a child with a disability is akin to experiencing death. People go through what are commonly referred to as the Five Stages of Death, described by Elizabeth Kubler-Ross: 1) denial, 2) anger, 3) bargaining, 4) depression, 5) acceptance. These stages take various amounts of time to go through, and sometimes you backtrack. I know that several times I went from depression, back to anger and bargaining again. Depression is something that can creep back in again and again.Date: 10/19/2008 2:32:29 PM
Author: lisa1.01fvs1
This has been a very valuable thread for me and there is absolutely no 'piss-off' material here!
It is so good to read about family functioning and 'outcome' since in preggo-land everything is so abstract and theoretical.
Forgive me, but my experience w/ genetic anamolies was mainly with the shocked parents who were in the completely unprepared group with infants who were extremely critical. Perhaps had they pursued ultrasound and had support their initial experience would have been different. Although, I am not familiar with when various congenital problems can be detected (considering that termination is already late after amnio around 19-20 weeks). Would there be enough time to detect problems within the fetus in time for possible termination if going by ultrasound evaluation post DS dx by amnio? In my state 24 weeks is the cut-off, a very uncomfortable cut-off.
In some ways being abstract and theoretical helps clear the mind for what is a huge emotional unknown.
As for termination, there is plenty of time after diagnosis for a second term abortion, usually in an inpatient setting. As for after the identification of severe malformations that make not be identified until later in the pregnancy, I believe that when there are matters that threaten maternal/fetal life the medical community has quite a bit of leeway on intervening. Now, I'm strictly talking clinically.
Emotional effects of these diagnoses and actions are huge no matter the decision made or the intervention taken. In my personal case, again, I'm glad I did not know because of the incredible amount of stress I would have put on myself and the pregnancy.
As to your last statement, "In some ways being abstract and theorietical helps clear the mind for what is a huge emotional unknown." I find myself able to simultaneously completely agree and completely disagree with your statement. The detachment we feel or are given by the medical community is wholey a deception, because the situation, by definition, is quite proabably the most emotional you will be faced with. Shouldn't that emotional link be equally considered?
No wonder the parents you have encountered have been a wreck. Very, very few parents would be anything less. This is why I so advocate parents receiving such a diagnosis should be put in touch with "real people" as soon as possible!! Paul and I have gone to visit new parents in the hospital, and we have met with pregnant parents to answer any questions they have and show them what things look like after acceptance has been reached.
On that note, Paul jut got an invitation in the mail yesterday to the DSACO's (Down Syndrome Association of Central Oklahoma) annual Haloween Party. This is for young adults 16+ and includes a DJ, food, dancing, and a costume contest. Chaperones are welcome but not required. This means the party is for the young people, their own party, their own peers!! He's already putting together his costume. He is going as Old Deuteronomy from the Broadway muscial Cats. Yes, his choice. Like I'd be able to come up with something like that!!!!