....RE: OT Rapture...Re: Re:abortion, politics, b

[Guest guest]

Yes, I've written MANY things defending SP, which is very difficult

when I'm trying to stay away from the internet. I generally try to

focus my energies on helping women with a prenatal diagnosis on the

DS pregnancy board. But of course there has been a TON of stuff

from all over, and to be honest I've actually spent much more time

defending SP than I have Obama despite the fact that he has my

vote.

In defending SP the way I see it is I defend myself, as a woman, a

mother of 4, a mother of a child with DS, a mom who received a

prenatal diagnosis, a former working mom in a tough profession. I

have defended her on all of these issues and along the way educated

some people about the best way to hold a baby with DS, why she would

have been tested without a termination in mind, why she would have

kept that private, how she can handle work and family, etc. I have

not seen things attacking her religion (I mean on the boards I

frequent) but certainly I've seen other things and I try to focus on

what I know (DS & the things I've said above) and educate. Honestly

there are way too many posts for me to find them all (still not

finished my speech).

As an example, at the bottom of this post is the the post I put on

Salon.com (which I also posted on Pat Bauer's blog). That's my

most " public " defense. All others are private on closed boards. I

do not go searching for controversy.

Here is my comment from Salaon - I think September 5

The ignorance of many doctors

" We could ask, given that Palin had no doubts about seeing her

pregnancy through, why she bothered to take a genetic test. "

And THIS is the question of a medical professional? I am horrified,

but it certainly represents the attitudes of many medical

professionals when it comes to prenatal testing.

Many women truly grappling with a decision to do invasive testing

need to be aware of ALL of the pros and cons, not just the ones many

doctors bring up. And if they would not terminate a pregnancy, they

need to be emotionally prepared for the onslaught of termination

offers, comments, and sometimes intense pressure both internally and

externally from family, friends, and medical professionals. Here is

a list women who would not terminate can actually use:

PRO:

* settles the question

*better prenatal care (monthly growth scans; fetal echocardiogram;

late-term non-stress tests; heightened sense of caution by docs);

monitoring may pick up problems to be treated by bed rest, early

delivery, or a change in the birth plan

*time to adjust, grieve now, happy when the baby is born (do not

underestimate this)

*time to learn (and there is a LOT to learn)

*possibly rethink birthing plan & place of delivery ((hospital with

a NICU? Higher level hospital? near a children's hospital? induced

delivery during the day before 40 weeks?)

*prepare the family & friends (as much for them as for you so you

can have their full support)

*better birth experience than if diagnosed at birth (Dr. Skotko's

research)

*make after-birth plans such as child-care, breastfeeding with DS in

mind

*check on quality of health insurance

CON:

*risk of miscarriage (MUCH lower than thought in the past)

* squeamishness over procedure itself

* offers from doctors to terminate, possibly pressure (even if you

assert your view ahead of time); possibly comments from friends &

family, possibly pressure

* faced with possible termination decision (for many moms who are

sure they won't terminate, this is not an issue; for others such

thoughts take them by surprise, which can itself create feelings of

guilt and shame on top of the grief)

*grief possibly complicated by not seeing the baby

*possible emotional distance from pregnancy and thoughts of

miscarriage

*overwhelmed with info about potential medical issues, possibly out

of proportion to reality

" Kids with special needs require and deserve intense therapies and

attention to their needs. " This is a common over-simplistic

generalization many women receive from medical professionals when

receiving a prenatal diagnosis.

These children are INDIVIDUALS and as such their situations vary. As

far as " intensive " therapies are concerned, for many this consists

simply of PLAY THERAPY - something your child enjoys.

The " attention " may be the same level a typical child would receive,

or more intensive attention. The simplistic over-generalization

above in no way reflects the rainbow of experiences of parents with

children with Down syndrome, nor does it take into account the high

levels of parental satisfaction and family stability shown in

studies following families of a child with Down syndrome.

Ms. Palin does not need your " admiration " for continuing her

pregnancy, nor do I and the many women I know who have had a

prenatal diagnosis. Such admiration implies a burden greater than

that taken on, and diminishes the many benefits in parenting one's

child. What we as patients NEED from our doctors is support in a

decision to continue a pregnancy. The research, my personal

experience with a leading obstetrical organization, and the personal

stories of many of the women with whom I have spoken all lead me to

the conclusion that doctors push terminations, either deliberately

or unintentionally, and are completely unaware of the cumulative,

devastating emotional impact of repeated termination offers.

Women need accurate information about the risks and benefits to

testing that go beyond a simplistic " terminate or not " mentality.

Women facing a prenatal diagnosis of Down syndrome need accurate

information, and doctors should have solid, accurate information,

referrals to genetic and developmental experts, and parent groups.

No parent should have to seek out referrals and parent groups on her

own. I have both experienced and heard many stories of mothers

hearing termination information immediately after a diagnosis but

having to struggle to get referrals, information, and contact

information. Doctors often negatively over-simplify the experience

of the life of an individual with Down syndrome, are unaware of the

progress this population has seen on so many levels in past decades,

and are unaware of the current research on improving cognition for

individuals with Down syndrome (see the DSRTF).

Regardless of a doctor's predispositions and prejudices, regardless

of a woman's decision, women deserve accurate, balanced information,

and non-judgmental counseling. If a woman (like me) tells her doctor

in advance she will not terminate a pregnancy, why do doctors feel

they need to repeatedly bring it up? Why would a doctor NOT have

available a list of resources, experts, parent support groups? I

think a lot of that has to do with the opening sentence, along with

the high termination rates influencing the expectations of doctors.

I also believe many more things are involved, including an idea in

the minds of OBs that termination is within their area of practice

and advice, while information about a child is another's area. While

that may be true, advances in prenatal testing have resulted in OBs

being the gatekeepers of this information, and as such they have a

responsibility to see that their patients are adequately informed

and supported.

If a woman chooses termination, doctors need to be aware of the

emotional impact of such a decision and have adequate information

and support at the ready. Research reveals that many mothers who

have had a termination for medical reasons experience symptoms of

post-traumatic stress, even years afterwards. As I remember that

research, such symptoms were reduced if the mothers felt their

decision was based on adequate information and not rushed. Mothers

receiving a prenatal diagnosis, regardless of their decisions, are

benifitted by information, neutrality, and respect -- not

assumptions, ignorance, or admiration.