[tri-med] Re: Full Trisomy 17

I too think that it is better for some of us to not have prenatal diagnosis of 
a disorder. I feel that it was easier for us that we didn't know that our 
little Christopher had full T-18 before he was born. I didn't worry throughout 
my pregnancy and I felt I was having a normal pregnancy. The only thing that 
the drs really noticed is that he was smaller (only 6#,13oz at birth) than his 
older brothers were (Brian was 8#,6oz; Joshua was 9#,3oz) & the dr even had 
that gall to ask me if they had the same father- I really felt like slappping 
him & saying "What does one & only mean to you?" They did find out that he had 
a kidney defect 3 days before he was born, but they didn't see the rest of the 
picture. They just told us that it was something they would look at after he 
was born. (another words, don't worry about it & we didn't). I'm actually glad 
that the drs didn't know because he was in breech and they chose to do a 
C-section. (They told us later
 that they wouldn't have done the C-section if they would have known that he 
had a fatal condition)- Boy, did that really annoy us!!! Just because a child 
has a disability, you don't give up on them. I feel that the C-section helped 
him as it could have been more stressful & harder on him with his heart defects 
to go through a normal birth. So, even though it was like being hit with a ton 
of bricks when he was born, I feel it was best that we & especially the Dr's 
Did not know! But even if we would have known, it really wouldn't have changed 
our fight for him. He was here for a purpose, we loved him & he will always be 
in our hearts, he fought a good fight & was with us a lot longer than those drs 
ever thought he would. He was one of our 4 precious blessings from God. 
~Kandy K Goodrich
~wife of David (our 24th anniversary will be next month)
~mom of Brian (22), Joshua (17), Christopher (3-6-1997~1-26-1998, T-18), Sarah 
(7)
 


----- Original Message ----
From: D McHugh <dori_m@xxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Thursday, July 17, 2008 3:27:12 PM
Subject: [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 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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                  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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