(Get
your mind out of the gutter!)
Neither
Cameron nor I had ever heard the word “omphalocele” before that fateful day in
the doctor’s office, but oh, how’s it’s become a dominant word in our daily
vocabulary since then! While poring over online resources in the days
following our baby’s diagnosis, we discovered that the parents of these babies
called them “O babies”, and referred to the omphalocele by just a letter
O. It sure beats typing it out and
having Microsoft Word underline it in red squigglies every time! Since learning that our baby girl has what is
known as a giant omphalocele, the “Big O” has taken on an entirely new meaning.
If
you’ve already made the mistake of google image-ing Omphalocele, I apologize
for not warning you sooner. That was a mistake I wish I could take back from
that first afternoon we knew. I was not
ready to see the images that traumatized me for weeks. If you are not the type who likes to see
blood and guts (literally), do yourself a favor and wait until we post pictures
of our baby girl, whose omphalocele will surely be the most beautiful O the
world has ever seen.
The
word omphalocele (pronounced um-FA-luh-seel) literally means “herniation of the navel” and is a condition
that occurs during fetal development when the abdominal contents (which
actually migrate out of the abdomen and into the umbilical cord naturally for
part of early development) fail to descend back into the abdomen before the
abdominal wall closes. The organs are
then contained only by a thin membrane attached to the abdominal wall, like a
balloon. No one knows what causes this
to happen, and it is very rare. Our baby
girl has what is known as a giant omphalocele, which occurs once in every
10,000 births. Hers contains pretty
much all of her abdominal organs, including her liver, intestines, gall
bladder, and stomach.
There
is nothing that can be done to treat the omphalocele in-utero, but we go to the
high-risk OB office every 3 weeks or so for close monitoring of her growth,
organs, and especially heart. The most
commonly co-occurring problem is heart defects, so she gets a fetal
echocardiogram every month. This part
actually has a great silver lining in that I get to see her so often!! She will be delivered via C-section to avoid
any additional trauma to her organs.
Once she’s born, treatment options range from immediate surgery to
enclose the organs to painting the O with a protective coating and waiting for
her skin to gradually grow over it, with other options in between. We won’t know for sure how she’ll be treated
until she arrives and the doctors can evaluate her in person. No matter what, she will be in the NICU for
quite some time.
Since
Cameron is in the Navy, we have always wondered if he’d be home for the birth
of our first child. And YES, he
will. We are in the process of making
arrangements for him to be home (in-port) as much as possible after her birth
as well. Thankfully the military has special provisions
for cases like this, and this is a huge blessing for our family.
OK,
I think that about covers what people have asked. If you have other questions, feel free to
leave them in the comments section, and I’ll do my best to answer them.
Here's your reward for studying so hard. Our little cupcake...
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