Got my ire up!

iVillage Member
Registered: 02-04-2008
Got my ire up!
77
Wed, 04-16-2008 - 3:52pm

Ther more I think about this, the more upset I am getting... must share.


I went to the building in which my sister (Shannon) works to tend to a client account.

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iVillage Member
Registered: 05-06-2007
Thu, 04-17-2008 - 11:34am
Maybe she needs a new doctor.

melissajune21.jpg picture by ambersspace


&nbs

iVillage Member
Registered: 05-06-2007
Thu, 04-17-2008 - 11:36am

"she was told that the baby had Downs all they did was suggest and offer abortion...."

Um, your sister may have misunderstood, because I'm pretty sure that the dr wouldnt tell her for certain that the baby had Downs based on such a test. Yeah.

melissajune21.jpg picture by ambersspace


&nbs

iVillage Member
Registered: 06-17-2007
Thu, 04-17-2008 - 12:11pm

Interesting study. It doesn't actually prove that Angil's sister's encounter was "fairly common," though. Let's look at the details.

Yes, 2945 questionnaires were sent out, but only 1250 came back. Of those, only 141 received a prenatal diagnosis, so we're actually talking about a very small number of women.

<<>>

What exactly does this mean? I don't feel like I get enough information about anything in a doctor's office. I realize there's a whole world of information out there, which is why I try to get what I can from the doctor and go from there. Beyond that, the women who said they didn't get enough information on DS from their OB's are looking in the wrong place. Even the writers of the study indicated that obstetricians are not trained in treating children with DS. Why, then, should they be expected to provide tons of accurate, up-to-date information on something that is not within their specialty?

<<>>

Perhaps this has something to do with the limitations many states have on terminations. The woman on my EC who found out at 23 weeks that her fetus had Trisomy 13 (catastrophic fetal anomaly) had one week to decide to continue or terminate the pregnancy. Since abortions (even just inducing labor) for such a situation are considered elective terminations of pregnancy, it was illegal for her to pursue such a route after 24 weeks.

Beyond that, the numbers certainly do not suggest that Angil's sister's situation is "fairly common." Of the 139-140 women who answered the questions about their doctor encouraging a termination or continuation of the pregnancy, in both cases, the average answer sided on mild disagreement. This means that the average score indicates the majority of women did not feel pressured to do either.

Finally, we notice that they did not bother to interview women who received a prenatal diagnosis of DS and then went on to abort. Considering that seems to be the majority of women who receive such a diagnosis, it appears that the researchers were missing a big opportunity here.




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iVillage Member
Registered: 06-17-2007
Thu, 04-17-2008 - 12:18pm

I wanted to add onto my previous comments. In the conclusion of that study, the researchers state:

"Conclusion: Receiving a prenatal diagnosis of DS need not be a negative experience. By
implementing suggestions proposed herein by the mothers, health care providers can even make
the situation a positive one."

I hate to say this, but I think that you'd be very hard-pressed to find someone who would not consider receiving a DS diagnosis in their child to be a negative experience, regardless of what anyone said to them. There's a woman on another board in IV who just received a postnatal diagnosis of DS in her newborn daughter (no prenatal diagnosis). Try as we might to be as supportive and encouraging as we can (by focusing on how beautiful her daughter is or how she seems to have escaped some of the heart conditions many DS children have), no one expected her to receive it positively, and I doubt there was any way her physicians could have made "the situation a positive one."

At best, following the mother's suggestions, physicians can try to make the experience less painful.




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iVillage Member
Registered: 04-29-2005
Thu, 04-17-2008 - 3:22pm


http://www.acog.org/from_home/publications/press_releases/nr05-07-07-1.cfm


"Genetic counseling by professionals is very important for our patients," added Dr. Driscoll. "Ob-gyns need to be well-informed about Down syndrome so that they can provide their patients with accurate information and relevant resource referrals so that they can make informed decisions."


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iVillage Member
Registered: 02-04-2008
Thu, 04-17-2008 - 4:04pm

Let me get as specific as I can "THEY BELIEVED THAT THE BABY HAD DOWNS AS THE TEST INDICATED WAS LIKELY".

iVillage Member
Registered: 03-07-2007
Thu, 04-17-2008 - 6:24pm

I'm sure there are nicer ways to be "specific."


T




"If I show up at your door, chances are you did something to bring me there."

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"What you se

iVillage Member
Registered: 06-17-2007
Thu, 04-17-2008 - 6:41pm

"Genetic counseling by professionals is very important for our patients," added Dr. Driscoll. "Ob-gyns need to be well-informed about Down syndrome so that they can provide their patients with accurate information and relevant resource referrals so that they can make informed decisions."

And let's hope that providing information and referrals for parents would be enough. Do we know it would? No, we don't. As such, being well-informed is a far cry from providing patients with all the information they could ever hope for. What one patient would consider not enough information could be information overload to another. On top of that, do we require that OB's be well-informed on all the other kinds of conditions their patients' future children may have? Why is DS special?

"Probably because these women would most likely not belong to a DS parent organization."

I understand that, but I am still critical of the researchers scope. The idea that they did not consult women who aborted after such a diagnosis because that was not part of the study is a circular argument.

The bulk of their study relied on the women who received a prenatal diagnosis. As such, it makes no sense that they would ignore the experiences of the women who received that diagnosis and went on to abort, considering that would be 90% of those receiving such a diagnosis (if the current stats are accurate). Surely those women had opinions on the way their care providers shared information, and maybe some of them even regretted their decision.




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iVillage Member
Registered: 05-06-2007
Thu, 04-17-2008 - 6:48pm

No offense, but is your sister mute? Was she not able to ask for information and/or resources on Downs? Or were the doctor and nurses supposed to read her mind?

Most likely the reason she was asked about termination so often is because time was of the essence.

melissajune21.jpg picture by ambersspace


&nbs

iVillage Member
Registered: 08-31-2004
Fri, 04-18-2008 - 8:42am

I may get shot for this, but I think it's fairly reasonable to assume that someone with a prenatal Downs diagnosis would abort.

baby siggy

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