[tri-med] Re: please help me to decide (edward's syndrome)

Hi Rohaizah,

You have come to the right place to find out all you want to know 
about Trisomy 18 (Edwards Syndrome) babies. As you have probably 
gathered from others responses to you, there are no set rules with 
"our kids". By the way I am grandmother to Tess who has Trisomy 18 
and is now ten years old. We were given the prognosis "take her home 
to die", and here we are ten years later. It has been a hard 
struggle, and her parents are now divorced. They have shared care 
with her mother having her four nights a week and father (our son) 
three nights a week, and half the school holidays. Tess now attends a 
school with a special needs class, which is attacked to a normal 
primary school.

Tess has been diagnosed as "profoundly mentally and physically 
developmentally delayed". But let me tell you there is a lot more to 
our Tess than just a label. She is a loving beautiful little girl, 
very tiny for her age, with a great sense of humor. She understands a 
great deal, but cannot express it verbally. She vocalizes, shakes her 
head for yes and no. Claps when she means yes. Tess uses a wheel 
chair. She can not stand alone, or walk alone, but did take a few 
steps in a walker.

Medically Tess is now quite fragile, as she has developed pulmonary 
hypertension. Tess also wears BIPAP at night nime to help with her breathing.

Tess is very loved by her family and friends and we just try to make 
her remaining life as happy as possible. I could email you a photo 
off line if you like. We can not send photos to the list.

I wish you all the best what ever you decide. It is not an easy road 
to travel, but there are great rewards to be gained.

sincerely,

At 01:17 PM 29/03/2007, you wrote:
>Hi,
>I am a new member to this group.  I am from Malaysia.  I am 19 weeks 
>pregnant and I was told by my doctor 2 days ago that my baby is 
>having edwards syndrome.  The doctor told me that the chance for the 
>baby to survive is very minimal.  She asked me whether I want to 
>continue the pregnancy or just terminate the pregnancy.  I am so 
>confuse right now!  I might feel guilty if i terminate the pregnancy 
>as i can feel the baby moving in my tummy ; i already feel the bond 
>between me and the baby and of course I love him so much!  But at 
>the same time i also don't want the baby to suffer after his birth.
>I know some of u might have baby with the syndrome.  may I know how 
>is it dealing with this baby during their birth ... does it mean 
>that my baby will have to be in the hospital for the rest of his 
>life?  How do u feel to see your baby suffer with many 
>complications? ... please share with me your experience as it might 
>help me to make my decision.
>
>The doctor gives me 1-2 weeks to make up my mind.  I really need 
>your response and advise.
>
>Thank u very much.
>
>Rohaizah Salleh
>
>
>
>
>____________________________________________________________________________________
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>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
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>28/03/2007 4:23 PM

Jocelyn, Wife to Frank, Mother to Ian, Gillian & Susan. Maker of 
quilts, singer of songs,
Nanna to Carly 19, Mathew 18, Ashleigh 17, Alex 14, and Tess 10 years 
old with T18.
also step Nanna to Carrie age 19. & Great Grandmother to Eli, Jonas & Escha.
Living in NSW, Australia 

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

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