[tri-med] Re: Newly diagnosed Trisomy 18

 

Hi Rory, 

My name is Mike Lally and back in February my wife Liz and I recieved
similarnews.  In desperation I hit the web searching for answers that
somehowmight change what I had learned about our little Mary Theresa.
Eventually I found my way to the Trisomy List and it was here that I
receivedthe real answers.  I learned that the most important thing I could
dowas love my wife like never before.  Hug her, hold her, be with her, and
celebrate the life of our unborn child while we still had her.  And so we
did.  Each night we read to her, sang to her, talked to her, and prayed that
we would be able to accept whatever came down the pike.  Mary Theresa's
heartdifficulties eventually proved too severe.  Like her mom, she had a
verybig heart.  Maybe one that was too big to survive life as we know it
today.  She may not have made it, but we did.  The experience has made us
realize how precious and occassionally fleeting life truly is.  Medical
information is very important, but never forget each other.  The people on
the list taught me this.  Listen to them.  They know the truth. Mary theresa
is with us everyday.  I really haven't written about the experience of
holding her, and having a day with her , but I will soon.  It sounds like
your little girl has a strong heart.  Our hopes and prayers are with you. 
Peace.  Mike and Liz Lally

>From: FJF237@xxxxxxx >Reply-To: tri-med@xxxxxxxxxxxxx >To:
tri-med@xxxxxxxxxxxxx >Subject: [tri-med] Re: Newly diagnosed Trisomy 18
>Date: Sun, 27 May 2001 18:15:18 EDT >>In a message dated 5/25/01 2:53:25 PM
Eastern Daylight Time, >rabell@xxxxxxxxxx writes: >>>>>>Dear Rory, >Sorry
youhave to come "here" but glad you found this great list. My son >was
diagnosed with T18 after birth. We had no idea prenatally, thus he was
>resuscitated at birth and placed on a ventilator from which he was never
>weaned. Nathan lived for 7 months in the NICU so I've got some "hospital
>experience". The surgeries we agreed to were doctor recommended 1) a g-tube
>2) a trachea. The surgery we agonized over was placing a shunt. Nathan was
>born with hydrocephalus and the doctors told us that a "normal" baby would
>undergo shunt surgery immediately. In our case it was namely up to us. We
>did not want to put him through pain so we took a "wait and see" approach.
>Nathan did pretty well, so well in fact, that the docs checked his blood
>twice for mosaicism. It always came back as full T18. Finally we agreed to
>ashunt and the surgery was a success. Nathan's death was probably due to
>aspiration. Hope this helps. The choices are hard; wishing you all the
luck.>>Fay Mom of Herman-7, Jacob-6, Moshe-4, and little Nathan full T18
>10/28/99--5/24/00 >>>>Building ___ooOOoo__ Rainbows >www.trisomyonline.org
>Families Helping Families On-line >

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