[tri-med] Re: Newly diagnosed Trisomy 18

----- Original Message -----
From: "Rory Bell"
> My wife is 27 weeks pregnant with our first child. An intensive ultrasound
> revealed the very real possibility that our daughter, Caris has trisomy
18.
> The ultrasound showed that Caris has suffered a diaphragmatic hernia which
> is causing her stomach to grow in the chest cavity.

Hi Rory, and welcome to the family we love but wish we never had cause to
seek out.......

You will find families on the list whose children have lots of medical
issues, some who have none, some who have "more" serious problems to Caris
and some who have "less" serious issues....... some who live longer and some
who gain their angel wings way too soon. But you will also find that Caris
is totally unique as all our children are, and I think thats my greatest
prayer - that our children will be treated as individuals - not as a
syndrome.

Alex didn't have the diaphragmatic hernia so I can't give you much advice on
a personal nature. However our youth ministers son had a CDH. He has a
different syndrome to T-18 (they suspected T-18 for a while) and he is now 3
and doing very well...........

Have you contacted Cherubs? They are a support group specifically for
children with a CDH and are wonderful with information and support. Their
web site is http://www.cherubs-cdh.org/

All I can really advise is learn as much as you can about Caris' individual
problems and then trust your parental instincts. You will know what you need
to do........
And in the meantime live one day at a time, love her all you can and make
each minute special. Lean on us when the bad times hit, and share the
highs - we are a crazy but loveable bunch - really. The touch of insanity on
the list actually keeps us sane...............

You certainly have my love and prayers........... and I look forward to
learning a lot more about all of you.

Ask questions from your heart and you will be answered from the heart.
     -- Omaha Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (6, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org


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

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