[tri-family] Re: Trisomy 13

Thank you everyone for your great emails and information.  We are gaining more 
and more knowledge about T13 as well as how these on line support groups work.  
We are now registered on both the tri-family and tri-med lists.  Thank you for 
letting us know.  
 
We are continuing our research and are very grateful for your stories and the 
experiences you have shared.
 
Becky
jwaite <jwaite@xxxxxxxxxxxxx> wrote:

----- Original Message ----- 
From: "Rebecca Bahr" 
> The results of the FISH (genetic testing run on my amniotic fluid)
confirmed our doctors concerns that our baby has Trisomy 13. Our doctor
informed us that due to the many different organs that are affected and our
son's heart condition that his chances would not sustain life. This coming
Monday my husband and I have a consultation with the doctor and his staff
along >with a genetic counselor.

First up Becky, are you on the tri-med list as well as this family list?????
That is where these types of discussions take place out of respect for
tri-family members. Also, many folks with living triers are on the med list
and NOT the family list (which is the light and fluffy fun list, not the
'living with trisomy' list).
If you aren't on the med list I'd strongly advise you do so. You'll get a
lot more from there than here exposure wise.

We do have quite a few t-13 folks represented on the list, right at the
moment a lot of them are away meeting each other at the SOFT conference.

Many conference folks and those still here on the lists have been in the
same boat as you currently find yourself, even though they may have
different flavors of trisomy the ride is often very similar if not identical
in many areas.

Some places you can check out for information:

SOFT (support organization for trisomy 18/13)
http://www.trisomy.org

MUMS (parent to parent newsletter)
http://www.netnet.net/mums/html
e-mail mums@xxxxxxxxxx

NPPSIS (national parent to parent support and info system)
1-800-651-1151
e-mail nppsis@xxxxxxxxxxx

NORD (national organization for rare disorders)
http:www.nord-rdb.com/~orphan
e-mail orphan@xxxxxxxxxxxx

Please know that even though you are traveling a path that many here have
sadly already trudged (some post-natally with no prior warning such as you
have) there are many routes to take.

Every individual, every family, every situation is different. Be true to
yourself, follow your heart and you will find the way that is right for you
all.
Some decide to terminate the pregnancy.
Some decide to give birth but not allow intervention but comfort measures.
Some decided to give birth and allow limited intervention.
Some decided to give birth and allow any and all medical intervention
available.
Sometimes the biggest trick if finding a medical practitioner who will
follow your wishes.
Also very important: if your significant other is involved in the pregnancy,
make sure YOU TWO discuss your feelings and wishes BEFORE you appointment so
that you have covered some of the ground ahead of time and have an idea
where each other stands. Better to know before your sitting there making
decisions than having a side-bar discussion in the moment with others
watching.

If you decide to proceed with the pregnancy then we have a lot of folks here
(normally!) who will have excellent advice on birth plans and how to get
what you want/desire.
This isn't an area I have any experience as we didn't know until after Alex
was born (18 yrs ago!) about his trisomy 14.

Good luck Monday and stand firm with whatever convictions you feel.

Michelle mom to Alex (18, partial trisomy 14 mosaic) and Molly (14)
MichiganUSA


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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