This is the first time I have ever created a blog, I have so much that runs through my head and I feel as if venting to friends and family all the time will eventually become redundant. This way I can say the things I'm thinking everyday and still have my family there when I really need them. My husband and I got married at the end of May and a week and a half later we found out we were almost 4 weeks pregnant. We weren't trying to have a baby, we already have a four year old, but after the initial shock wore off we were really excited. The pregnancy was pretty hard from the beginning, physically I didn't have problems, no morning sickness or typical symptoms, but just a little tired. From early on I started cramping really bad, after my first doctors appointment they told me that I had a UTI, which I never had before. At my 10 week appointment I went in for a routine checkup and started bleeding that morning. They went to look for the baby's heartbeat and couldn't hear it, which led them to do an ultrasound to check on him. During the ultrasound they noticed a tear in my placenta that caused the bleeding, they wanted me to relax for 2 weeks and would come back and check with another ultrasound. Matt and I went in for my 12 week ultrasound, we saw him moving, jumping, his heart beating; we were happy. After the ultrasound the doctor told us that our baby might have spina bifida, but something looked wrong; he sent us to the maternal fetal high risk center at the Women's Hospital.
After waiting for 2 long days we went in for our appointment and the doctor told us that our baby looked as if his brain was developing abnormally, his femur's were measuring short, and they believed he had skeletal dysplasia. Another week of worrying went by when I woke up in the morning and started bleeding a lot with extreme cramps, I truly believed I was having a miscarriage, and was ok knowing our baby was just not meant to be. In fact after another ultrasound that day the doctor said our baby was alive, but definitely had a lethal form of Skeletal Dypslasia and would probably not survive to term and definitely not life. She recommended "terminating the pregnancy". They bumped up my high risk appointment and we went in 2 days later for an ultrasound, speak with a genetic counselor, and possibly an amniocentesis. The ended up diagnosing him with Thanatophoric Skeletal Dysplasia Type 2, which has a record survival rate of 167 days. This type occurs in 1 in 60,000 to 1 in 100,000. During the short amount of time they survive they have hardening of their skin, placed on breathing machines, have tonsils removed to allow more room for breathing, have seizures, and eventually go into respiratory failure that causes death. It is a painful existence.
At this point the doctors recommended what is called a D&E, they would put me to sleep, dialate me, and "evacuate" the "tissue" with a vacuum. This was hard for me, our baby isn't "tissue" and not something that should be just vacuumed out. A couple of days later I went into Forsyth Hospital and went into labor. It was very painful, more painful than giving birth to Bryson. I had doses of Morphine injected into my IV, had Percuset to take, and still the pain was unbearable. 6 hours after labor began they hooked me up to a pain pump that contained Demerol, finally some relief. Giving birth to a baby that you know will die is emotionally hard enough, let alone adding pain. After 12 hours of labor Matt left to grab some breakfast, this was around 10:45 am on Friday August 13th 2010. I wasn't supposed to go to the bathroom alone, at this point my BP was between 83/46 to 87/57 which caused me to almost pass out while trying to get up. I decided to go to the bathroom anyways, they place small bowls that attached to the inside of the toilet to measure how much fluid you loose, I started peeing and saw that blood and tissue was starting to come out. I started to worry and didn't want to deliver my baby into a toilet. I grabbed a pad off of the counter and layed it out, this is what I delievered my baby on, by myself, in a hospital bathroom. I immediately rang for a nurse and they rushed in, helped me to my bed, and took our baby out of the room. I delievered him at 10:56 am. I was happy that we gave our baby a birthday, we gave him a name, and we had him cremated. After about an hour they brought him in our room so I could hold him. He was only slightly bigger than the palm of my hand. His head was in the shape of a heart and extremely misshaped, the other details of what he looked like are to hard to say and break my heart. They did an exam of him and said the doctors were right in that he had a severe form of lethal skeletal dysplasia. Most of my doctors had never had a case of a child with this and we had one nurse that had seen a baby with the same condition once before. As rare as this condition was there was a girl about 3 years younger than me down the hall delivering her baby at 20 weeks with the same condition. He was born a couple hours after our son was, her son died the same day as ours.
It is hard, we wanted our baby so bad, I wish his original possible diagnosis of Spina Bifida was correct, I was ok with a special needs child. I would have loved him just as much. Instead at 10:56 am on Friday the 13th of August Cameron Michael Johnson became our own angel.
We had to go home and explain to our four year old what happened, I told him that our baby is with God. When he asked why I told him that our baby was so special and cute and God couldn't wait for him. Last night Bryson asked me where God lives so he could go and take our baby back from him. My heart is broken, I feel empty inside. Now I am just trying to stay strong.
