[tri-med] Re: Hey Jude!

Small world Jude!
 
I'm also from Indiana and lived in Indy for a while.  My daughter was born in 
Mishawaka and son born in Indy.  Hubby was in the military and we were 
stationed here and here we'll stay.  Love the winters here.  No snow!  Love the 
ocean even though I don't go to the beach as often as I promised myself when we 
first moved here.  
 
MUSC's genetics department probably hasn't changed much.  I bet I could teach 
them a few things now that Bryson is in our lives.  They should have found more 
markers to indicate he had T13 but I think they were not very forthcoming.  The 
genetics counsellor we met with only glossed over the possibility of a syndrome 
that can accompany a cleft lip and/or palate, but didn't elaborate much on 
that.  But once he was born and my SIL came back to the labor room, and told us 
what he had seen, I immediately knew.  The folks in NNICU were wonderful to us 
and the nurses and doctors very caring.  My only beef was that as soon as they 
had the karyotype results, they prepared a DNR.  We had a meeting with the 
Neonatologist, the Head of the NNICU, a lactation consultant and Hospice and 
Social Workers to determine a plan to take Bryson home.  They said that he 
wouldn't live past a week.  When he was 2 weeks old was possibly the scariest 
time in our lives.  The man delivering Oxygen for Bryson witnessed an episode 
where he wasn't breathing and said a prayer for us right then and there.  
Bryson's daddy is a combat medic and a hero in my eyes.  He has saved Bryson 
from certain death so many times.  But with his will, Bryson's will, and God's 
will, he has survived.  He still has some serious issues but he is a very 
resiliant little guy.  There are no further surgeries needed at this point.  
 
He will progress with physical therapy and sometimes will fall back.  I want to 
know if that is something others have seen with their kiddos?  Do they seem 
that they are doing well with PT then they fall back like they've forgotten 
everything?  We're going through that with Bryson now.
 
Doretta McHugh
Grandma to Bryson Nault
Full T-13
Born June 9, 2006
> From: jfwolpert@xxxxxxxxxxx> To: tri-med@xxxxxxxxxxxxx> Subject: [tri-med] 
> Re: Do you think this suspicious?> Date: Sat, 20 Sep 2008 17:26:13 -0600> > 
> hubby job transfers...> we married and lived in dallas for 3 years, then 
> memphis for 6 years and the > big kids were born there. on to indianapolis 
> for 2 years and charleston for > 9 years and kam was born there. musc was 
> very good to kam except for the > genetics dept.> we have been in colorado 
> for the last 7 years and i think this will be the > retirement place.> bill 
> is from michigan and i am from indiana so we have always lived away > from 
> family and that has suited us just fine.> bill's parents are now looking for 
> a retirement home close to us in boulder > and that will be great. i am the 
> oldest and my folks had me when they were > young so they are in pretty goos 
> shape.> jude, mom to derek-22, kelsey-20 and kameron-11- full trisomy 18> 
> golden (soon to be boulder), colorado> www.judewolpert.com> 
> http://home.comcast.net/~jfwolpert2/wsb/html/view.cgi-photos.html-.html> > > 
> ----- Original Message ----- > From: "D McHugh" <dori_m@xxxxxxxxxxx>> To: 
> <tri-med@xxxxxxxxxxxxx>> Sent: Saturday, September 20, 2008 5:14 PM> Subject: 
> [tri-med] Re: Do you think this suspicious?> > > > Jude,> >> > Yes we are in 
> the Charleston area. All of these children were born at > > Medical 
> University of South Carolina (best medical facility in the area) > > Prior to 
> Bryson being born, we only knew about the cleft lip and possible > > cleft 
> palate so my daughter's prenatal care was transferred to MUSC > > because he 
> was at risk of feeding problems after birth. It wasn't until > > after he was 
> born that he was diagnosed through karyotyping that he had > > Full T13 Same 
> with this young lady down the street. She was 32 weeks > > gestation. She had 
> preeclampsia and had an infection and was transferred > > to MUSC for high 
> risk care. After the baby was born and before the mother > > took seriously 
> ill, she got to hold her baby in her arms when she passed. > > The infection 
> was pretty bad and spread to her kidneys and lungs and she > > had to be 
> placed on a vent and strong antibiotics. They almost lost the > > mother 3 
> separate times. It has been a week frought with suffering for > > this 
> family.> >> > We that live here in this neighborhood are all very concerned 
> as these are > > our children, the next generation that are having these rare 
> disorders > > with their babies. Several other of "our kids" from the 
> neighborhood also > > are infertile though they have been trying. My daughter 
> and son-in-law > > (also from the neighborhood) have been trying to get 
> pregnant for two > > years with no success. This again is why I asked if it's 
> something > > possibly environmental. Many of us concerned have lived here 
> from 13-16 > > years. Many of us moved here when our children were pre-teen.> 
> >> > Nonetheless, I'm hoping that at least DHEC (Dept. of Health & > > 
> Environmental Control) should have the necessary stats on the health of > > 
> newborns, stillbirths etc in this community.> >> > What brought you to South 
> Carolina Jude? And then to Boulder?> > Building ___ooOOoo__ Rainbows> 
> www.trisomyonline.org> Families Helping Families On-line> 
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