The Diagnosis..

How do I start this? I am a stay at home mom of two boys. My first was born October 12, 2009. My second was born October 15, 2011. When I found out I was pregnant with our second child, I was nervous and ecstatic at the same time. I was so scared that this was not the right time. Time.. huh funny how it is never the right time? Anyway, I kept imagining the chaos of two kiddos running around the house and me chasing after them all day. After a few weeks I started to feel better about it and even got a little excited. After a few months my husband and I told our families we were expecting another child. His due date was December 09, 2011. Everyone was excited and life could not have been better.

I went in for a routine ultrasound at about 20 weeks. We were so excited because this was the ultrasound that would tell us whether this baby was a boy or girl. I remember that my husband and I were fighting over something so mundane that day. I can’t even remember what it was. They called my name and we went into a dim lit room for the ultrasound. In my experience, the tech usually guides you through what he/ she is looking at and measuring. They usually tell you what is what and how large the head is and so on. During this ultrasound it was complete silence. She took a photo of the pelvis area and pointed out that this wonderful baby is a boy. She found the heartbeat and told us simply this is his heartbeat. She went on measuring and getting still shots of several organs with no conversation. After finishing she told us that she was going to speak with the Dr. and he would be in to speak with us in a moment. My husband and I were so overjoyed to be having another boy mostly because our first boy is amazing and would love love a brother. The tech eventually came back in and told us that the Dr. would need to web conference with us because he is not in. Immediately we knew something was up. We went into an office and spoke with a Dr. through the webcam. The Dr. said ‘We have discovered some birth defects with your child. They look to be very serious. The defects are comparable to those associated with a genetic disorder called Trisomy 13. Trisomy 13 is “incompatible with life”.’ Incompatible with life. The most insensitive and devastating words I have ever heard. They have certainly left an imprint in my brain. So cold. I don’t think I heard much after this. The DR told us that we would need to schedule an amniocentesis to confirm that our baby boy had Trisomy 13. We went right away to the office that the DR was located at and had the procedure done. After the procedure the DR told us a little more about Trisomy 13. Trisomy 13 is a disorder where the each cell in the body has an extra copy of the 13^th chromosome. There is a type of trisomy 13 called mosaic trisomy13. This means that the extra 13^th chromosome is only present in some cells instead of all cells in the body. People born with this can live several years with the right care, our child did not have mosaic trisomy. He also told us that the baby could pass away at any point. He could be stillborn, or he could live for a few hours or days. He said there is no chance at a life with this child, he cannot survive. He said that we had the choice to terminate this pregnancy if we so choose.

My husband and I were speechless. I remember walking to our car and bursting into tears as soon as we closed the doors. I don’t think I stopped crying for days. How could this happen? Maybe they are wrong. Maybe the images were warped in some way and my baby that I feel kicking me is healthy. I felt him grow and kick me and I’m hungry just like every other pregnant mom. I never even considered terminating this baby. I asked my husband how he felt and he felt the same. We don’t have the right to take away someone else’s life. I told him a mother’s love is instant. We’ve already bonded and he’s ours for as long as we are blessed with him.

We eventually told our families about our new baby boy’s diagnosis. Everyone was supportive and told us to be strong. God never gives us anything we can’t handle they said. I realize this is supposed to be comforting but please. My concern is not for myself at the moment; it’s for this innocent baby boy who hasn’t been given much of a chance. For my 1^st son, who is having his little brother ripped from him before he even understands what a brother is. For my husband who has to stand up and hold all of us after this awful news.

We went on with the pregnancy as normal while hoping and praying for a miracle. We decided to name our baby boy Gabriel. It means God’s warrior. It was rare that he made it this far and we decided to name him for how strong and beautiful he is/ was. We met with the head of the NICU at the hospital we were going to deliver at. My husband and I decided that when and if Gabriel was born alive, we wanted as much time with him as possible. We wanted to immediately hold him and not have him rushed to a surgery or given breathing tubes. We wanted him to have peace and to feel loved. The DR recommended a beautiful birth plan written by a nurse who had a child born with a similar condition. The plan is called “String of Pearls”. http://stringofpearlsonline.org/. After this we just waited and I tried to keep Gabriel as healthy as possible. The emotions were a roller coaster. How was I supposed to plan for my child’s death, before he was born? I kept wondering if this was a dream. This baby kicks me as much as my first did, maybe even more. I really was happy because I felt him every day, we lay together every night. I can’t describe the bond between mother and child, you only know if you have experienced it. It’s beautiful; I couldn’t help but be grateful for him and love him with all my heart. In October I started to feel different. I was having a lot of stomach cramps and started to feel that tiredness that happens at the very end of pregnancy. I almost knew he was coming soon. I decided I needed to get him clothes, and at least one blanket. I think my husband thought I was paranoid and kinda nuts. I can’t explain this either (ha some writer right?) I just knew he would be here soon. It was time to meet Gabriel.