Ray of Hope

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 1^st 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 15^th. 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 14^th 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 15^th 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.