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 Virginia
Beach, VA - Dandy-Walker malformation
Hi, my name is Gayle, and my son, Josiah, was born on May 23,
2010 with full trisomy 13. At my 20 week ultrasound, we were told
that he had some kind of abnormality in his brain and were sent to a
specialist for a more detailed scan. After the second ultrasound, we
were told that Josiah had Dandy-Walker malformation along with some
hand deformities. The specialist told us that he suspected some kind
of genetic disorder and recommended an amnio, which we decided to
decline.
The next ultrasound revealed enlarged kidneys and some cardiac
anomalies. I had no problems with the actual pregnancy until the day
I hit 37 weeks. I realized that evening that I hadn't been feeling
much movement that day, if any. After drinking some coffee and
lying still for awhile didn't produce any movement, I went to the
hospital to be monitored. Josiah's heart rate was too high but would
drop too low during contractions (which I was having here and
there).
It was decided that he needed to be born that night, so at 11:16
pm Josiah arrived via c-section. I did not get to really see him at
that time because he was immediately surrounded by doctors. The
neonatologist came over to speak with us in the operating room and
let us know that he also believed that we were dealing with a
genetic disorder based on what he was seeing. It was obvious that
Josiah's eyes were severely underdeveloped, and he had an opening on
the back of his scalp where the skin had not closed completely.
While I was still in the OR, he was taken next door to the
children's hospital. We found out a little while later that he had
had to put on a ventilator because he wasn't breathing well. The
next day, I was able to go over and see him and was struck by how
adorable he was! On the second day, as we arrived to visit him, the
neonatologist caught us in the hall and took us into a room to talk.
The preliminary results of the genetic testing had come in,
revealing that he had full trisomy 13. He talked to us a little bit
about what that meant, since we didn't know anything about it at the
time. We were very, very fortunate to be at a wonderful children's
hospital that clearly values life, no matter what. The doctor let us
know that they would do everything in their power to care for
Josiah, just as they would do for any baby. On the third day, I was
discharged from the hospital and went home briefly to see my three
older children. We were only home about an hour when we got a call
from the doctor who told us that Josiah was not doing well and that
we should come back pretty quickly. That day was a whirlwind as we
contacted all of our family members, brought everyone to the
hospital, had a baptism, and took pictures with an awesome
photographer from NILMDTS.
We were told that Josiah might only be with us for a few more
hours; maybe a few more days at the most. But that wasn't the case
as he stabilized and started making progress over the next few
weeks. Now, here we are one month later, and Josiah has been off of
the ventilator for almost two weeks. He was on high flow oxygen for
about a week and is now on "wall" oxygen only. He is taking in
almost three ounces at a feeding through his g-tube and has gained a
whole pound. If all goes according to plans, we will finally be
bringing him home in a few days.
I wanted to get this in before then because I know I will be too
busy for awhile after that! We are so very thankful for the time
that we have been able to spend with Josiah. Every day is such a
beautiful gift from the Lord and so is sweet little Josiah!
Gayle Himmelwright
mom to Josiah Bryan Himmelwright
born May
23, 2010
Virginia Beach, VA
gabengayle@verizon.net
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