In less than 3 weeks, Congenital Heart Defect Awareness week will be here. The internet is all aflutter with upcoming events to raise awareness for CHD. I am no different in my efforts. My story just has a different ending. Many of you already know that ending, but not so many know the beginning. I plan to break the story up a bit, posting a little bit at a time because there is so much to tell.
So we start at the beginning.
We started talking about adding to our family near the end of 2005. I found out I was pregnant in March 2006. It was a Valentine's Day baby. At the time, I was between jobs when two companies expressed hiring me the same week. One was working as a cashier for a new hardware store opening in the area. It meant a lot of time on my feet and heavy lifting. The other was taking inbound calls at a call center. Because I was in my first trimester, I went with the call center so I could sit and take care of myself.
My first trimester was filled with spotting. Because my previous pregnancy had been high risk, I was overly cautious. My pregnancy with Brandon was a scary thing. I had a low lying placenta that caused me to bleed out if I over exerted myself, gestational diabetes, a preterm scare and finally a premature birth. When I started spotting with the new pregnancy, my mind filled with worry.
My doctor told me it was implantation bleeding and not to worry. Eventually, it tapered off and finally stopped near the beginning of my third month. By my fourth month, I decided to switch jobs and take the cashier job. It was right down the street and I could walk to work. I thought it would be good for my body to walk every day. I felt great! I took it easy on my new job. I took breaks and put my feet up and took care of myself. No lifting. Rob had also taken a new job in February and the boys were in daycare and doing well. We were a typical two income family working hard to raise our family and prepare for our next child. I was 4 1/2 months pregnant and feeling fantastic. As a matter of fact, I didn't even feel pregnant. That nagged in the back of mind, but I put it off to all of the changes in our lives. Then everything changed.
It was a Sunday. My mother in law was visiting from KY. I went to work as usual and felt fine. About an hour into my shift, I felt uncomfortable, so I took a bathroom break. I was bleeding! I notified my supervisor, who sent me home immediately. Once I was home and called the doctors, I was told as long as the bleeding didn't increase to lay down and keep my feet up and come in first thing the next morning, which I did. I had an ultrasound and baby was fine. Placenta was fine, blood work was fine, everything was fine. Except I was soaking a full sized pad in less than a minute for no reason. I came in every 3 days for another ultrasound and each time, the same thing. Nothing was wrong with the baby or the placenta despite all of the bleeding.
After the third ultrasound, the midwife told me the technician couldn't get a good look at the baby. I wasn't surprised. It took 3 ultrasounds for the tech to "think" it was a boy. He was a stubborn little thing. I still didn't feel pregnant. I was 5 months and never felt the baby kick. The ultrasounds at least let me know someone was in there. Since they could not get good pictures of him in their office, they wanted to send me to Medical University of South Carolina (MUSC) for a level 2 ultrasound on the baby so they could check his heart and umbilical cord. Goody! Another ultrasound to peek at my little guy! I took my best friend with me.
That's the day my world changed.
We giggled with excitement as the tech started the ultrasound. Stubborn baby. Would I please turn on my side. Now the other side. Could I please pull my legs up. Now down again. Lift up the tummy a little. Push, pull, twist, turn. Somethings not right. It must be the machine. Let's move you to the next room and try again. Same scenario. More turning and twisting to get the baby in a good position. Aha! She had found the cause of the bleeding. A subchoronic hematoma. More twisting and turning. Finally, two hours later, she says the doctor will be in to talk to me. Oh, and it was definitely a boy!
I don't remember anything except a man in a white coat introducing himself as doctor so-and-so and telling me one side of my baby's heart was too small and his umbilical cord lacked a blood vessel. I was to report for a fetal echocardiogram. Now. No appointment, they're waiting. Wait. What?
We drove the two blocks to Children's hospital and reported to the 5th floor. They weren't kidding. I was taken right back. I found out a fetal echocardiogram is an ultrasound of just the baby's heart. Guess what? More push, pull, twist, turn. Stubborn, stubborn little guy!! Up until this point in my life, the only things I had ever heard about heart defects was Sylvester Stallone's daughter born with a small hole in her heart that was fixed. No details, just that she would grow up normal and healthy. I'd heard of murmurs, but didn't know what they were. I'd never heard the term Congenital Heart Defect. This was my 4th child, I wasn't a newbie at this. I knew the tests, I knew the statistics for Down Syndrome and spina bifida. Why all the hullabaloo over my baby?
After the tech finished the echo, my friend and I talked. Confused and a little scared, I didn't know what to think, except where did I go wrong? Did I overdo it somewhere in the beginning? Not enough vitamins? Secondhand smoke from someone I walked passed on the street? Two people walked into the room. His name was Dr. Shirali and he had his nurse with him. How gently do you break it to a mother her child could die? He was about to show me. Compassionately, he began to explain was a heart defect was. He told me it was nothing I had done and honestly, there was no explanation why. He had a booklet with drawings of different heart defects. My baby's defect was not in that book. It was too rare. Instead, he drew me a picture as he explained.
So, he'll grow out of it, right?
So much information to take in. There were options. We could do nothing. My baby would be born and we would take him home to make him comfortable and let him die naturally. It was called "compassionate care". What's so compassionate about letting your baby die while you let it happen? We could put our son through a series of surgeries that would reroute the way his body carried his blood to give him more oxygen. The first one would be shortly after he was born. My head swam. What about a heart transplant? It was not a good option because finding a heart that small that was a match was nearly impossible. Then I was given my third option. In the State of South Carolina, legally, I had 3 weeks to decide to abort the pregnancy. At that time, I would be 6 months. I told him about my history of preterm births. He told me the baby had to be born term or he would more than likely die.
How does a parent process all of this? Now I had to go home to tell my husband. He was devastated. I told him about the abortion option. Numb with grief, he left the decision to me. I started looking up my son's defect online. It took about an hour just to find out what it was. It really was rare. I read the medical statistics. I read about what to expect. None of it was good. My son would practically be an invalid for the rest of his life. I researched the abortion because I was feeling so lost and detached. I had never felt my baby move and now he had been given a death sentence. Should I just terminate and get on with our lives? I agonized over the decision.
And then the miracle that is Tommy, happened. Late in my 5th month, almost to my third trimester and nearing the end of time to make my decision, he kicked. I was pregnant! There was life in there! That little kick brought me so much hope. I knew I could never live with myself if I did not follow through with what we had started. Good, bad, life or death it was out of my hands and in God's. For the first time, I felt pregnant. I felt like I had something to look forward to. I started seeing a specialist with Maternal Fetal Medicine. I was diagnosed with gestational diabetes and was to start class in a few days to get my monitor and learn nutrition. Old news. My last pregnancy was diabetic too. Goodbye Sonic, Goodbye chocolate. I was 30 weeks into my pregnancy. Only 10 weeks to go!
So I thought.