[tri-med] Re: Full Trisomy 17

I must respectfully disagree on the issue of not knowing prenatally... and
please understand that this is strictly my opinion.  Many moms on this list
will say that they were happy they didn't know and others may say the wish
they did... it is a toss up for many, but not for me.
For some, it may be better to not know in advance, but for us, we just
happened to have found out early and were able to have many decisions made
before our child was born. We had a birth plan, a priest waiting to christen
her, and just as important, my husband and I talked on a very deep level
about life and what comfort care meant to us -- unlike parents who suddenly
deliver a child with severe problems.

We found doctors who were willing to do what we requested and being
prepared, for us, was something that we valued.

Just my opinion.  It is definitely different for each parent... what they
can handle and how much support they recieve from family, friends and
doctors.  We were lucky and we were better prepared than we ever hoped... we
didn't have very high hopes I suppose.

People don't get to choose whether they know in advance or not...they can
choose to have an amnio, but many aren't offered one and many feel they
shouldn't get one because they wouldn't terminate.  Amnios and terminations
should not be seen together. Amnio gives you information, it doesn't not
imply (tho many drs feel it may) that you will terminate if your child has a
disability.  For us, it was information that was like a crystal ball for
us... I am a firm believer in the use of technology when it is available.

There are times I wish drs didn't know she was a Trisomy (when they see the
diagnosis, not the child), but in those cases, I distance my family from
narrow-minded people like that.

Debbie and Claire (T18 and 5 years old)

On Thu, Jul 17, 2008 at 6:27 PM, D McHugh <dori_m@xxxxxxxxxxx> wrote:

> You should be referred to a Medical University.  My daughter who's baby had
> only at that time had been diagnosed as having a cleft lip and possibly a
> cleft palate was referred from a military hospital to the Medical University
> of South Carolina.  They sent her there because the baby needed to be in a
> NNICU due to the feeding issues he would likely have.  Consequently once he
> was born, we found out he had Full Trisomy 13.  He is now 2+ years old and
> healthy!
>
> Sometimes I think it's better that they don't diagnose trisomies
> prenatally.  But then, that's just my opinion.  We weren't prepared for
> Trisomy 13, but then, even knowing prenatally, who really is prepared?  All
> it does is add stress and strain on the parents and I think that sometimes
> affects the outcome.  We are glad we didn't know.  (ignorance is bliss???)
>  Now we are far from ignorant about T-13 and treat Bryson as normal as
> possible and are very proud of him and to have him in our lives.  Treat the
> child, not the diagnosis!
>
> Doretta
> Grandma to Bryson Nault
> Full T-13 born June 9th, 2006
>
> Hey...he pulled himself up to a standing position the other day, all by
> himself!!!!!> From: hardyboyz@xxxxxxxxxxxx> To: tri-med@xxxxxxxxxxxxx>
> Subject: [tri-med] Re: Full Trisomy 17> Date: Wed, 16 Jul 2008 02:47:23
> -0400> > > >>>>>>>>>I cant even find an OBGYN right now who will deliver
> this baby. My> OBGYN has > told me I have to find another doctor as her
> hospital will not let her > deliver a high rish baby like this. I have
> visited 4 others hospitals and > OBGYN's and as soon as they hear my story
> no one wants me. I feel like such > a reject of the medical system right
> now. Like I have a contageous disease > that no one wants to
> catch.<<<<<<<<<<> > > > I don't know where you live, but here in Ontario
> Canada if you show up in> good labour they cant refuse to treat you, we have
> had patients show up who> have been under the care of doctors at other
> hospitals but the patient> decided that they wanted to deliver in my
> hospital so they just came when> they were in labour, we can
>  t turn them away, or another scenario, my friend> was visiting her mother
> 2hrs from the hospital she was to deliver in when> her water broke, so she
> went to the closest hospital and delivered there. I> know that does not
> really help with the OB question but I hope it eases some> fears, I assume
> you live in the US and our health care is different here.> Keeping you in my
> thoughts, and even though my daughter had a different Dx,> T18 she lived to
> be 14 1/2 years which was so much more then they told us> she would.> > >
> Susan Mom to Rebecca T18 M 6/6/91-5/2/06 and Mark ADD/LD age 16> > > > >
> Building ___ooOOoo__ Rainbows> www.trisomyonline.org> Families Helping
> Families On-line>
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>


-- 

When babies look beyond you and giggle, maybe they're seeing angels.
~Quoted in The Angels' Little Instruction Book by Eileen Elias Freeman, 1994


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

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