During pregnancy I never had any sickness. The only time I
really felt sick to my stomach is when my husband was cooking some hot dogs,
well that night I told him he couldn’t do it no more. The hot dogs smelt like
dead fish on the bank of the lakes. My
husband went to the ultrasound appointments but not to every doctor
appointments. I remember him getting aggravated because I started feeling our
baby move and kick way before him. I had to be quite and just grab his hand
when our baby started kicking so he could feel the kicks. Every time I would
say our baby is kicking is when the kicking stopped. Truthfully, I got a big
kick out of it! This was our first baby so I didn’t really know all the things
that came with a pregnancy on the feeling part. The day I first went to the
OB/GYN I ended up going to the emergency room later that night because I
started bleeding. After being there for hours (I did get to see our baby so it
was worth it) they said everything was fine, released me and I had to go to a
checkup two days later.
On May 1st is when it seemed like we could not
breathe. It started out as a normal day. We got up and got ready for our
ultrasound. We were so excited because we got to see our baby again. This was
the day that our world started turning upside down. They ran the test to check
for Down syndrome and any other issues. Well the nurse left then came back in
and after that said the doctor wanted to speak to us. We went into the room and
it seemed as it took forever for him to come in. When he did he told us he was
sending us to a doctor that is through Kosair Children’s Hospital but has an
office near us. He said that there was concern that our baby had a disorder. He
could not tell us because that is not what he does. Told us many times he has
sent his patients to her and it is nothing but he would rather make sure. I got
a phone call a few days later saying that our appointment was made for May 15th.
During the days waiting it felt like I was in a stand still, I couldn’t believe
something might be wrong. I told my husband if it is Down syndrome we would
still love our child and it was no big deal.
The night of the 14th I stayed up late. I sung to
our baby, I prayed to God for our baby, and sat feeling the kicks and turns. I
just could not sleep so needless to say the morning of the 15th I
was tired. However, not too tired to go or pay attention. I got down there and
had to fill out paper work. It seemed as it was taking a lifetime to be called
back to be checked out. When we went in my husband sat in the chair. The
ultrasound began. They looked and measured more than I had been done in the
past. There was a point in time I knew something was wrong because she kept
looking at the same thing for a very long time. She then left the room to call
the doctor. The doctor was not physically there but came up on a camera and
they began looking at our baby again. After that my husband and I were lead
into a conference room where another television was. We were told the doctor
would appear and that she would be able to see us as we could her. About 5
minutes went and my nerves were working double time. She finally appeared on
the screen. She wasted no time on getting to the point. At that time we were
told our child had a rare chromosomal disorder called Trisomy 13. Also told
that his brain had not developed the way it should have (which is in early part
of the pregnancy), that he also had Alobar Holoprosencephaly, she noticed
something with his heart and spine as well.
She then went to say “Your baby is incompatible with life.”
That is when I broke down. I could not bear those words and never thought that
is what we were going to hear coming in. She gave us a few minutes as my
husband held me. He had tears and I was crying more and more. After a few
minutes I wrote down what she was saying (so when I got home I could research).
The next words out of her mouth are “With this diagnosis I highly recommend you
to terminate this pregnancy that your baby will not make it to birth.” I didn’t
respond because of the shock I was in. She told me to go home and think about
it because I still have a few more weeks to make that decision. We got up and
left.
It was a very quiet ride home. I finally looked up and said
there is no choice to make because the option was not available and our child
deserved the chance at life. My husband got home and dropped me off and had to
go to work. I called family members and told them what was going on. They and I
began research, research to more understand what all the words meant and to
find somewhere that would help our baby.
That day and night dragged on. I took a nap then woke up and
called the doctor we had just seen. I had questions that I could finally get
out of my mouth, questions that no parent should have to ask. I also told her
termination was not an option for us. She answered my questions and I got back
to do more research. That is when hope finally hit me. I found other babies
with Trisomy 13 still living and some in their teens. That ray of hope did wonders.