[tri-med] Re: Full Trisomy 17

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

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