[tri-wings] Re: To all of you


>If anyone could write me about their experience so we have a better idea on
>everything and could take the best decision for our Amanda. It is really
>the biggest and hardest decision I have ever taken in my life.



(((Oh Esmirana!)))  We went through the same agony with Michelle.  I asked
the same question to other T18 moms and worried about our decisions.  I was
told stories of children that had the surgery and survived, ones that had
the surgery and died, ones like Rebecca that never had the surgery and
survived past 2 years and then ones like Michelle that never had the surgery
and died before they were one.  There just isn't enough information out
there or there are just too many variables with all our children to make one
definite answer the best. A wise mom from this site told me that we make the
best decision we can at the time with the information we have and not to
look back and keep questioning our decisions. That's all we can do.

At first we decided against the heart surgery because we didn't want to put
Michelle through it if she was going to die anyway.  But then as she
continued to survive and grow, we started to get worried that scar tissue
might be forming in her lungs so that she would never be able to have
surgery.  Then at 6 months, just as we were exploring the surgery option,
she got sick and we discovered that her lungs would have never survived the
surgery at that point and she died of pulmonary hypertension.  

This is what I wrote to my friends that were praying for us: 

Life with a child with Trisomy 18 is more than a roller coaster ride.it is a
ride where you have to make all these decisions on which path of the roller
coaster you want to ride.  Every path is scary and we're trying to make the
best decision so we get on the path that is right for us.  AUGH!!!  We were
going to have G-tube surgery for Michelle on Oct. 6th.  After meeting with
the anesthesiologist at Children's Mercy Hospital, we found out that
Michelle would have to receive general anesthesia and not conscious sedation
to do this surgery.  Conscious sedation is only used on older children that
can understand and be cooperative.  Michelle would cry and this brings down
her oxygen level.  Her cardiologist and the anesthesiologist agree that
general anesthesia is a big risk for Michelle because her body has found an
equilibrium.  She has a large hole in her heart (8mm VSD) but the high
resistance in her lung blood vessels is keeping the blood from crossing this
hole right now.  General anesthesia would lower this resistance, change the
balance and her oxygen levels would fall which could kill her or start the
road to her heart failure.  We've not done heart surgery or even really
explored it yet.  One study (and there are not many studies with T18
children) showed that congenial heart defects did not effect the survival
rate of T18 babies.  Of course, the survival rate is only 5% to 10% past the
first year.  We were hoping to wait it out and if Michelle made it to close
to a year we would investigate surgery.  Why put her and us through major
surgery that she might not survive if it didn't lengthen her life span?
Well, Michelle has already beat the odds making it to 6 months since the
medium survival time was around 10 to 14 days.  But we just don't know how
long she will be with us.  The problem is that we can't do any kind of
surgery which includes getting rid of this NG tube with her heart condition.
And the cardiologist thinks that our window of opportunity to do the heart
surgery is closing because the high resistance in the lungs is forming scar
tissue which can't be reversed and that is why Michelle's oxygen levels are
slowly dropping.  We might not have a year to make this decision.  We don't
even know if we can find a surgeon to operate on Michelle because of her
Trisomy.  If we don't fix her heart, do we risk the G-tube later?  We keep
learning more and hope that the answers come to us.


Amanda and your family is in my prayers as you make this difficult decision.
Give Amanda a kiss for me.  Even though I usually just lurk, I rejoiced at
her birth and your announcement!

Ann Ekis, mom to Sarah (15), Beth (13), Mark (11), Brian (9), our beloved
saint in heaven Michelle Rose T18 (5/1/03 - 10/26/03) and God's surprise due
April 4th.  Wife to Joel

Overland Park, Kansas  USA

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

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