[tri-med] Re: Newly diagnosed Trisomy 18

Rory, welp you came to a good place where you will find pleanty of trisomy
babies doing very well despite all the dismal prognosis our kids get.  There are
however times that are trying and losses occur, but never give up hope on your
child.  Caris having a good heart is a great sign, she ducked a doosie that most
of our kids suffer.  The hernia is of great concern,  surgury  can  correct this
as it has in the past, children are very resilant and should not be
underestimated.  Don't let your doctors sway you in not having the surgery - she
should be treated as if she was a "normal" child with the same hernia. Caris'
strong heart is great news because it will increase her chances of a successful
operation.  Our kids are very loving and valuable members of our families, as
Caris will be in yours.  Good luck and welcome.....

Rick (husband to Michelle, Father of Faren (T-18 July 1 2000 with two teeth) and
Shasta the doggie)



Rory Bell wrote:

> Hi Folks
>
> 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. This would also account
> for the vast amount of amniotic fluid in the uterus. The presence of the
> stomach in the chest has caused her heart to be displaced to the right and
> stunted the development of her left lung. Her heart has, however developed
> perfectly and would appear to be very strong. She also has the crossed
> fingers, receding jaw and prefers to lie cross-legged.
>
> An amniocentesis has subsequently confirmed our greatest fear. The probe for
> Trisomy 18 came back positive and we await the full genetic testing results.
> These will hopefully confirm the extent of what we believe to be a
> mosaicism. We were told that the prognosis for this condition is very poor
> with the vast majority of patients dying within the first few days of birth.
>
> We are committed to carrying Caris to full term. The big question at this
> stage is how much postnatal treatment/surgery we are willing to allow/offer.
> We are told that the diaphragmatic hernia will need to be repaired soon
> after birth, but that there is no point if she has trisomy. Much of the
> reading I have done so far would seem to support this, with most suggesting
> only supportive treatment. I was, however relieved to find this site and the
> real hope that there seems to be for trisomy patients - although I don't
> know that these cases are as severe as Caris'.
>
> Anyone with a similar situation or knowledge of children with this extent of
> trisomy?
>
> Regards
> Rory
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line

--
Rick Wilson
<rwilson@xxxxxxxxxxxxx>
Nerbonne Lab, Washington University School of Medicine
Dept. of Molecular Biology and Pharmacology, Box 8103
660 South Euclid Avenue St. Louis, MO 63110
Phone: (314) 362-2563  Fax: (314) 362-7058


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

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