Jenny L.

Children and adults with cleft lip and/or palate issues

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Jenny L.

Postby Anonymous » Wed Nov 26, 1997 2:31 pm

I am so happy to have finally found a site where others know
of my similar experience. My heart breaks for Darryl & his
wife. I know just how devastated you must have felt upon learning
of this condition but take heart because, thank God, this is
something that can be fixed! I know it's little consolation right
now, but you were lucky to have found this early on. I had 2
sonograms and still did not find out until after the delivery of
my son! I am fortunate to have a supportive family but in all
honesty, they were as new to this as I was and looked to me for
answers I myself didn't have. I wish that I had known of this
site and other parents who've experienced the same thing and
could tell me how best to deal with this. I am glad you found
this site where others can help answer some of your questions. I
hope some of the information posted here helps to ease your mind.
You and your wife are in my prayers and my best wishes to you
both.
Anonymous
 

Re: Jenny L.

Postby Darrell » Thu Dec 04, 1997 10:17 pm

Well we had another ultrasound November 26th and got more bad
news. The better equipment in Spokane shows that the baby has a
unilateral cleft lip and palate (originally thought to be lip
only), and in addition to this we have found out she is missing a
kidney, (the other one seems small) overall size of the baby
seems to be 3 weeks behind and as mentioned before, a club foot
is present. With all the problems that keep showing up we decided
to do an amnio. We did this because it really was starting to
look more like it was chromosones, not just birth defects. We got
the results today (December 4th), and the chromosones were fine.
We have another ultrasound scheduled for December 23rd. We
continue to ride an emotional roller coaster which has taken us
to new levels of despair and hope. We are so unsure what to
expect from now until birth and wonder at times will the baby
continue to thrive in the present and in the future. At times we
wonder will she survive the next 18 weeks, then we wonder if
she'll be ok when she's born. If she survives that will she
continue to thrive or get sicker? We want this child more than
anything. It would be devastating to carry a baby for 40 weeks
and have her die on delivery. We try not to get our hopes up, but
must remain positive. We also wonder what else might be wrong
that can't be seen on an ultrasound. Could their be mental
retardation or could there be other defects. It's an increadible
ride for sure and I wish this on no one. We are lucky to have one
child already but it doesn't make it any easier if this birth
should not be fruitful. We can only hope and pray that everything
will be ok. We are still uncertain whether to talk to a plastic
surgeon yet or wait till we get closer to birth. Again, thankyou
for everyone's kind words and encouragement.



Darrell stewart.clan.wa@worldnet.att.net
Darrell
 

Re: Jenny L.

Postby Mitchy » Wed Oct 11, 2000 11:46 am

I only just found your message ... poor you .... if you feel like sharing, how did it all turn out for you?
And strange, my two children had clefts, my niece has a mild cleft, my cousin has a cleft, and my nephew also has a club foot .... connected? Who knows
Mitchy
 


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