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Ethan Robert Hoff |
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due on Aguust 10, 2010 |
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Independence, MO - Full Trisomy 13 |
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Hello, My name is Ashley Hoff and I am pregnant with my first
child, Ethan Robert, who has full Trisomy 13. I am 23 weeks
pregnant, due on August 10. My husband Keith and I are from Omaha,
NE and are currently residing in Independence, MO. It's only been a
month since our world turned upside down. We were at our 19 week
ultrasound to find out the sex of the baby. During that time, the
tech noticed that the baby's stomach and kidneys looked "funny." We
stopped the ultrasound, and she brought the pictures to the doctor
to briefly examine.
It was determined that the baby had a
single-artery umbilical cord, causing the kidneys to be dilated. We
were then sent for a Level 2 ultrasound a few days later. It was
during that ultrasound that we were told that he had an abdominal
wall defect. We were devastated, and immediately had an amnio done
to see if there were any chromosonal abnormalities. Our preliminary
results confirmed our fears: Trisomy 13. We were given the grim
prognosis, given pamphlets for hospice care, and offered the option
of termination (which would have to be done in less than a two week
time span, since I was so far along). Needless to say, we were
quite overwhelmed.
The next few days were agonizing, as
we weighed the risks and benefits of continuing or terminating the
pregnancy. I actually went so far as to make the appoinment for the
termination, because I feared that if we waited too long, that would
no longer be an option for us. We prayed hard that week that God
would tell us in our hearts what the right decision for us was.
Ultimately, we decided to continue the pregnancy. We knew this would
be a difficult journey, but we also knew we would never regret
letting this baby live as long as he can.
Since that time
we've had a few appointments with our Perinatologist and new
specialist. We just had another ultrasound done last Thursday, which
still showed enlarged kidneys, as well as fluid in the brain
(Dandy-Walker Syndrome). The good news is that the doctor could not
detect any cleft lip/palate or other abnormalities on the face, and
the heart appears to be okay. While she did make a comment that
this is a baby that likely won't survive very long after birth, I am
still full of hope that maybe by the grace of God Ethan WILL have
the chance to come home with us. For now we're just taking things
one day at a time.
I started a blog last month to document
our journey. Here is the link:
http://babyhoffpage.blogspot.com/ I can only hope that it might
offer comfort and support to someone else going through a similar
experience.
Sincerely,
Ashley Hoff
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Submitted 4-3-10 |
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