[tri-med] Re: New to list...looking for options

Hi Jon-
 Welcome to the list. We found out when my daughter was 27 weeks that her baby
boy has T-13. It was first seen on the ultrasound that he has a cleft , kidney
abnormalities and heart defects.They first sent her to a Lincoln doc who was
very cold and didn't even take time to talk. Then we contacted other parents and
they recomended a doc at Children's. We went and they did an amnio and confirmed
the T-13.  We we totally devistated and felt very grim until finding this
wonderful list with all the great support from the parents. The doctors and all
the things you read really paint a poor outcome but as we've seen some can defy
the odds.Sounds to me the key is finding caring doctors and if they aren't keep
looking. The news is hard enough with dealing with uncaring people.  We didn't
know how to act after the news and have now been able to turn the nightmare into
a blessing. We have continued to love and cherish the time we have now and pray
for the best health for our little guy when he's born. Melissa is due the first
of Oct.There will be lots of decisions but finding peace right now is a
priority.  It's hard to convey to others of the transformation we have had over
the last weeks. It definatly feels like someone has punched you in the stomach
and it takes a while to catch your breath. The best advice I can give is get on
the internet and search all the sights. Melissa has found another T-13 board
also and more parents here in Nebraska.The internet is a God sent and gaps the
miles . What ever our future our baby has brought us to a better appriciation of
life and family and we'll always need the support of the other families. Melissa
gets on my computer at home if you'd like to talk to her.
lbieck@xxxxxxxxxx
prayers,
LouAnn Bieck
York, NE

mom to Melissa, 24  mom in law to Trent, Grammy to Maelin Ann,2 & baby boy T-13
due Oct.
also mom to Mick,28 & T.J. ,14

Jon Clements wrote:

> Hello All,
>
> My name is Jon Clements, I live in Longwood, FL.   My wife (Naomi) and I
> found out yesterday that our unborn child is probably going to have Trisomy
> 13.  Yesterday was an Ultrasound with a specialist here in Orlando after a
> "regular" ultrasound on Tuesday.  What they saw in the Ultrasound was a
> small head and a problem with the frontal brain developing, the entire front
> part of the brain wasn't there.
>
> They did an amnio to run more tests and we go in next Wednesday for the
> results.  The doctor said that whether it is T13 or not, the fact that the
> brain hasn't developed meant the baby would not survive.  I am at a complete
> loss.  Naomi is 26.5 weeks along.
>
> If it turns out to be T13, what options will we have?  I know you aren't
> doctors but you have been through this sort of thing and any suggestions or
> information you could provide would be great.
>
> Jon
>
>                   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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