[tri-med] Re: trisomy 18 suspected

Hi Heather,

I am glad you posted but sorry that you have reason to be here. It is such a
roller coaster ride we moms are on. My hope for you is that your little one
does not have Trisomy 18. There are many hard decisions connected to all
this but I just want to say that I admire you for carrying this baby inspite
of all the stuff you have been told. I am glad you are looking and
researching for yourself. As much as most docotors have good intentions in
alot of cases they do not have ALL the information to present trisomy in a
balanced way.
I myself just lost my son Jonah on April 19,2002, not even a week ago. He
was a beautiful little boy. I was induced  due to polyhydramnios. It was
ahard decision but one we are at peace with. He only lived minutes but they
were a gift to us, just like any and every life is a gift  no matter how
short or long. We also know we will see him again, we just have to wait
awhile.
My hope for you is that you have supportive friends and family. And you have
come to a good place. There is alot of caring and supportive people here who
really understand becasue they have faced this themselves. The struggle is
feeling so alone at times becasue even people who love you will not really
understand how this effects you or how deep it goes. I know for us becasue
Jonah came at 7 months along it is hard for some people to acknowledge his
life, but for us his life started at conception and was brilliant inside me
until the day he was born. They deserve everything a child without trisomy
deserves, becasue they are just babies after all needing love and affection
just like anybody else. So you go girl! You carry this little one and give
this baby all you've got. You won't regret it in the end, I don't. I would
do it all over again to see his beautiful, peaceful face. Life is a gift no
matter how brief.
I also have a toddler, my daughter Journey just turned 2 on April 14th, 5
days before her brother arrived. It is hard with the polhydramnios and
having a toddler, so I will be praying for you. Also remember that all the
decisions we must make are not easy but just do what leaves you with no
regret. I am so glad you posted and I hope you get all the encouragment you
need.

Sandi wife to Aaron mom to Journey ~ 2 &
Jonah Ethan ~ born and gone April 19, 2002.

PS. There is another board that I found helpful and supportive. I will
enclose the address.
www.escribe.com/health/trisomy18/bb/

----- Original Message -----
From: "Heather Morgan" <hrmorgan1@xxxxxxxxxx>
To: <Tri-Med@xxxxxxxxxxxxx>
Sent: Tuesday, April 23, 2002 4:33 AM
Subject: [tri-med] trisomy 18 suspected


> This is the first time I've ever posted on a listserv, but we have found
out in bits and pieces over the last four weeks that the baby I'm carrying
at the moment probably has trisomy 18.  I am 24 weeks gestation, and we have
decided to continue with the pregnancy regardless, and have also decided
because of that not to have the amniocentesis.  This decision was also made
because I had contractions that were regular last week for almost 12 hours!
What they have seen, however, is that the baby has Ventricular Septal
Defect, Clubfoot, tight and turned in wrists with overlapping fingers,
corroid plexus cysts in the brain, strawberry-shaped head, and its legs are
a bit behind in length compared to its head.  Oh, and I have polyhydramnios,
as well.
>
> So I guess with so many symptoms there's not much in terms of the question
of WHAT is wrong.  The bigger question for us is just what this will mean
for us as a family.  We have been told that most of these children don't
make it very long, but by the listserv discussions there are also obviously
some real fighters.  We live just outside of Toronto, Ontario (Canada) and
so are being followed by Mount Sinai Hospital and Sick Children's Hospital.
>
> This all looks like one big ramble ... I'm sorry.  I think mostly I'm just
trying to find out as much information as I can.  We have a daughter who is
19 months now (the baby is due in August) and I want to be prepared because
I know whatever happens this is going to be VERY HARD!!!  Any suggestions
people can offer would be extremely valuable.
>
> Thankyou.
>
> Heather - Mom to Kaitlyn (13/9/00) and unborn child (EDD 13/8/02) expected
t18
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

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

Other related posts: