Derrick's Story
"There's something wrong with your baby's heart," my doctor said. Those are words I will never forget, and that changed my life forever.
We were at a follow-up ultrasound after at the routine twenty week ultrasound when they couldn't "see everything they needed to see" in the baby's heart. We later figured out that they couldn't see everything because it wasn't there. I had a bad feeling about going in for this ultrasound, but tried to ignore it. As I laid there and the ultrasound tech clicked away, Justin and I took joy in watching our baby move around on the screen. She said she couldn't get the baby to turn the way she needed him to, and went to get another tech to help her. The girls sat there quietly looking at our baby. I began to get nervous, and when they finished, I asked, "Is everything ok?" "Dr. Moore will talk to you in a minute," the tech replied. As we waited, we grew more and more nervous. The time came and Dr. Moore called us into his office. We sat down, and our lives were forever changed. "There's something wrong with your baby's heart," he said. At first, I thought he was joking. I'm not really sure why, because that is obviously not something to joke about. I quickly realized that he was not. I tried to hold it together as he proceeded to tell us that he wasn't sure exactly what was wrong, but that he was going to send us to a pediatric cardiologist to learn more. We left the office in silence, as Justin and I really weren't sure what to say to each other. There were no words to describe the complete terror that we both felt.
The next day as we sat in the parking lot of the pediatric cardiologist's office, we prayed. We prayed that there would be something they could do to save our little boy. They preformed an echocardiogram and we learned that our baby had a three chambered heart. We were given three options. One, we could terminate the pregnancy. Two, we could take our precious baby boy home after birth and keep him comfortable until he passed away. The third option was for him to have a series of three open heart surgeries. One would be right after birth, the next within four to six months, and the third between two and five years. Without even looking at each other, we both said, "We'll do the surgeries." We already knew that we would do whatever we could to save our little man.
The next four months were filled with doctors appointments, echocardiograms, hours of research, fear, and tears. This was our first baby. I was supposed to be blissfully excited about welcoming him into this world. Instead, I was terrified and heart broken. I knew that he was safe inside me. It was so hard to imagine that something was terribly wrong with his heart when he would kick around, and even hiccup! I was very excited to meet him and hold him, but I was terrified about what was going to happen. Forget the fear of labor pains that I thought I would have. I was scared because I knew what he would be facing. I loved this baby so much, and I'd never even met him. I knew the instant I saw him that I would love him even more, even though that didn't seem possible. I was scared of loving him so much and knowing that there was a possibility that I could leave the hospital without him, drive home with an empty car seat, and walk in to a perfect nursery without a baby. I tried not to have these thoughts, but I won't lie. They were there. I prayed, and prayed, and prayed for God to save my baby.
April 19, 2009 finally came. We checked in to the hospital at the Medical University of South Carolina, and at 6:31 pm on April 20, our little miracle, Derrick Palmer Carter, was born. I held my breath as I listened for his cry. That first cry was, to this day, the most beautiful sound I've ever heard.
Derrick was immediately taken away by a pediatric team and Justin was able to go get pictures so that I could see him. About an hour later, he was brought to my room for us to get a quick peek at him. I finally got to see my beautiful baby boy. He looked perfect. It was impossible to know that anything was wrong with him other than he was in a little plastic box, for lack of a better word. We were able to open a tiny door to touch his sweet little hand. My arms ached to hold him, but I knew better than to even ask. After a few minutes, my brand new baby was taken away.
We were able to go the Pediatric Cardiology Intensive Care Unit (PCICU) a few hours later. Derrick was snuggled in his crib hooked up to many wires, but to our surprise, he was breathing room air. We were able to help give him his first bath and sit with him for a while. We could touch his little body, but that was it.
Over night Derrick had to be put on oxygen. This was shocking, but we were assured that he was doing fine. Many babies have to be on the ventilator right after birth, so we were lucky. That didn't make it easier, though. I couldn't hold back the tears. I guess I was a little disappointed, because I was still praying for a miracle. Praying that the doctors were wrong, that he was a healthy little boy, that we could leave without surgery, at least for a little while. Well, we couldn't, and I knew that. Reality was Derrick was having heart surgery, and there was nothing I could do about it.
When Derrick was four days old we were asked a question that we were sure wouldn't be asked. His wonderful nurse, Karen, asked us, "Have you held him yet?" "No," we replied. "We were told we couldn't hold him until the night before surgery." "Well, do you want to hold him?" she asked. Really, did we need to answer that question? She put him in my arms, and I lost it. The world could have crashed down around us and I wouldn't have cared. I was holding my baby! I cannot describe the overwhelming emotions I was experiencing. You will never understand how it feels to have to look at your baby and not be able to pick them up to comfort them when they cry, or to simply cuddle with them, unless you have experienced it yourself. No parent should have to feel this way, but at that very moment it was worth it. Derrick was finally in my arms, and there was nothing better!
The days went on with testing, echoes, blood draws, questions, and learning more about Derrick's "complex little heart" as the doctors liked to call it. We shed many tears, said many prayers, and spend many hours by our little man's side watching monitors and listening to the beeping of the PCICU. When Derrick was eight days old, it was time for his first heart surgery, the BT Shunt. Leaving him at the hospital the night before surgery was way more difficult than I imagined. We got a few hours of restless sleep, and were back at the hospital bright and early the next morning.
Our parents and pastor met us at the hospital that morning. We gathered around Derrick's crib and touched him, watched him, took pictures of him, and prayed for him. All I could do was cry. Even in my silent prayers, all I could say was, "Please, God." There were no other words that would come to my mind. All I could do was beg God to bring Derrick back to me. That day, April 28, 2009, I did the most difficult thing I have ever done. I sent my precious, tiny baby away with two complete strangers for open heart surgery. Watching his tiny body lying in his crib, hearing the click of them unlocking it, and watching him disappear down the hallway was grueling. I collapsed in Justin's arms, and we cried. I am crying as I write this, because it was a feeling I will never forget. A feeling I cannot describe, and one I would never wish for another parent to experience.
We made it through surgery receiving updates every hour. It was great to have people around, not that I wanted to talk, but having conversation going on around me helped somehow. We updated our Carepage and read messages of prayer from so many people who love our baby boy. When Dr. Hsia, Derrick's wonderful surgeon, finally came in to talk to us, we were SO nervous. He took us back to the conferencing room and told us that Derrick was doing very well, and that it was a "textbook surgery." He was able to perform the surgery without Derrick having to go on the Bypass machine, which was wonderful news. Dr. Hsia told us we could go back and see him in thirty minutes. We watched the clock the entire time!
Our family was able to accompany us to see Derrick for the first time after surgery. Much to our relief, he was not nearly as swollen as we thought he would be, and the ventilator didn't look quite as scary as I was afraid it would. He was covered in bandages, tubes, and wires, but under all of that, I could still see my precious baby.
The next 24 hours were critical, as they are with all surgeries, but Derrick made it through with flying colors. We had a few bumps along the way, but overall, he exceeded all expectations and we were out of the PCICU four days later. When we made it to the floor, we finally really felt like Derrick's parents for the first time. We bathed him, changed his diapers, woke up with him, and learned how to care for him at home.
Before we knew it, we were discharged and on the way home. A new sense of fear set in. How were we supposed to take him home without monitors? How would we know if he was ok? How 'blue' was too blue? Are you sure you want us to take this baby out of here? Can we really do this? How do we treat him like a 'normal' baby, he's not 'normal'? Is it ok if he cries? Oh, this was scary! We had so many questions, but we took him home. At sixteen days old, we could finally take our baby home.
We have gotten used to 'normal' life outside of the hospital. We try to treat Derrick like a 'normal' baby, but are well aware that he is not 'normal'. We go to many doctor's appointments, stress over weight gain and not eating, give what seems like medicine after medicine, and occasionally check his oxygen saturations when he looks 'funny' to us. This is our 'normal'.
We are currently awaiting the date for Derrick's second heart surgery, the Glenn. It is a moment of dread, yet I am somewhat ready for it to take place. I know that it has to happen to save his life, and that it is more permanent than his first surgery.
I always knew I wanted to be a mom, but never in a million years did I expect that I would be a heart mom. This sweet baby with a "complex little heart" needed parents who would fight for him. This is one way I can fight. I am begging, pleading, and crying for you to PLEASE spread awareness of Congenital Heart Defects. Please help us raise money for research so that our babies can grow up and have children and grandchildren. Right now, there is not a whole lot known about what will happen once children like Derrick get past their twenties. I am not okay with that. I need more. I need your help.
My baby is one in one hundred. My baby is a survivor. But to continue to be a survivor, he needs your help.
Shannon Carter, Derrick's mom