[tri-med] Re: trisomy 18, omphalocele

Hi Joel & Becky,
Welcome!  I, too, am sorry you had to find this wonderful group of friends.  
My husband, Larry, and I have not been involved for a long time.  We joined 
the group in July.  We do not have any experience with omphalocele however, 
we do have with full T-18.

Our situation was an early diagnosis of T-18 and a lot of genetic 
counselling.  We were told to just provide comfort care.  We did some 
investigating and decided on the comfort care at the begining.  Our little 
Philip was born March 18, 2002 at 4lbs 12 oz.  He was beautiful.  He was in 
the NICU for a week and came home on a feeding tube and a small dose of 
oxygen.  We requested an Apnea monitor and Oximeter to monitor his oxygen 
level and if he stopped breathing.  We wanted to be with him at the end.  We 
had him in hospice care.  Everyone was wonderful.  Over the next 6 months he 
defied all the doctors.  He continued to grow and at 2 months pulled out the 
feeding tube and would not let us put it back in!!
He had several heart problems diagnosed before birth and after birth they 
were revised.  The biggest problem was a large VSD (hole in the heart).  We 
finally found a surgeon that was willing to treat his heart.  September 19th 
he underwent open heart surgery.  The surgeon said it was a complete success. 
 He was pleased with the immediate results of the surgery.  However, the next 
day, complications set in and within 3 hours we lost our precious little 
Philip.  We are still working with the doctors so they will continue to treat 
these babies.  There does seem to be a general (not complete) attitude in the 
medical community to treat these babies like they will ALL die.  If they do 
not treat them, of course they will die.  They like to make the decision of 
treatment on their own by not giving complete information, or not researching 
and communicating with the parents.  Many of these babies do not survive long 
due to central apnea or other undetected problems.

From what we have learned, my suggestion is to research as much as you can.  
Question the doctors endlessly.  Talk to several doctors.  Search your 
feelings.  Then determine how far you want to go.  In our case, once Philip 
started growing, gaining weight, and getting stronger, we changed our minds 
on the extent we were willing to go for him.  You lovely little girl will 
tell you how far to go.

It did not take us long to figure out that our Philip responded to love and 
prayer.  Whatever your decision, hold her as much as possible.  Let her feel 
your love.  She will respond.  It is easy to try not to get close for fear of 
losing these babies.  Do not let that stop you.  The joy they bring is 
immeasurable.  I would not change a thing we did.  In Philip's short life, he 
accomplished more and touched more people than some  adults do their entire 
lifetime.  He brought our blended family together, and was touched and loved 
by an entire community.  They have all said they will never be the same after 
Philip.  They could see the love of God just by looking into his eyes.

We will be praying for you.  

Jackie wife to Larry, mom to Tina 11, Tony 9, Philip ^!^ 6mo, and Calico the 
cat.
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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