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

Hi, Rohaizah:
 

My heart goes out to you because I know how difficult it is to carry a baby
with Edward's Syndrome and the many decisions that need to be made
concerning their well-being.  I have had two children with that condition.  

 

First, let me say that you never know what will happen with your baby.  My
first daughter, Rachel, will be 6 years old in three weeks and she has a
very happy life!  Rachel requires care all day/every day because she has
many needs, but we adore her and she is wonderful.  My youngest daughter,
Regan, also had Edward's Syndrome and she lived only 59 hours.  Regan's
heart defects were so sever that there was nothing the doctors could do to
save her life even for a few months.  But Regan was wonderful, too!  Below
is a part of the eulogy my husband and I wrote for Regan's funeral.  I think
many of the members on this list would agree with what we wrote:

"Perhaps we could have had a healthy baby, but it wouldn't have been Regan.
And Regan was perfect. Regan had a heart defect and wasn't meant to live
more than 3 days. And there is no doubt that we would gladly take a minute
of precious time with Regan over an eternity with a different child. We were
so lucky to have known her, to have had her touch our lives the way she did.
And yes, it's so very sad that she is gone, but we were so blessed to have
had her the 3 days we did.... Regan has given us the ability to accept our
lives as they are and know that it is OK; something can be temporary and
still be life altering and wonderful. Regan brought out the best in us by
making us live our faith by showing the true strength and courage it takes
to accept life just the way it is; just the way Regan did."

I don't think you will be sorry if you carry your baby to term and give it
every chance to share its love with you.  It probably won't be easy, but it
will be worth the effort.  Even with all of her complications, Regan had a
good quality of life while she did live.  My husband and I took care of her
in the hospital and we did everything medically possible to make her
comfortable.  And, most important to me, she died in our arms knowing that
she was loved.

Aimee in Cincinnati, Ohio (USA) 

(mother to Rachel (full T-18) 4/18/01, Jillian Yun Ping 6/18/02, Ian
7/31/03, and Regan (full T-18) 2/9/06-2/11/06 ^i^) 

http://users.adelphia.net/~meierlaw

 

 

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of salleh rohaizah
Sent: Wednesday, March 28, 2007 10:18 PM
To: Tri-Med@xxxxxxxxxxxxx
Subject: [tri-med] please help me to decide (edward's syndrome)

 

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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