My name is Renee` Kress; however, this story and this blog are not about me. In fact, I plan on playing a minimal role in this voyage.
What this blog and the purpose of writing are about is my son, Gavin Walker Kress. Gavin was born on May 1st, 2006 - a baby who, by any standards, was bright and healthy and perfect. Unfortunately, prenatal testing, the apgar test, and any other standard means of testing an infant's health could not detect the killer that was already at work within his tiny body.
At three months of age, my son started to show severe developmental delays. He was not moving properly, starting to push himself up, or gaining any form of head control. These were the first symptoms of a problem that no one could have fathomed.
The lack of head control made the doctors think that he had torticollis, or wry neck, a condition that is the result of weak neck muscles which is usually caused during positioning during pregnancy. He also had a very visible condition known as pectus excavatum, where there is a severe depression of the sternum (breast bone). We were assigned therapeutic exercises and given the aid of physical and developmental therapists. Other possibilities were discussed, but this was the best and easiest first choice in treatment.
As a family, we were both confident and hopeful that this baby boy would come out on top - a fighter and survivor. We were all vigilant in making sure that he did his exercises and kept stimulated. Sadly, he was making very little improvement.
We went back to the pediatrician about a month later, and the fact of something much larger being wrong was staring us in our faces. A genetic test was ordered, and an appointment was made with a pediatric neurologist. Strings were pulled and we were seen faster than should have been possible. A visit that normally takes two weeks to occur, happened in 3 days.
Blood was drawn, tests were done, names were given. Spinal Muscular Atrophy Type I - that was what the doctors were calling the disease that was afflicting my baby. Until that day, I had never even heard of it, despite the fact that it is the number one genetic killer in children under the age of two. I did, however, become an expert almost over night, and my parents learned along with me. We were all facing this together. Gavin had become our world on the day that he was born, and we were not going to be ignorant when he needed us the most.
While waiting for the results of the blood work and genetic test, we remained strong, continued exercises, and tried to keep life as normal as possible for everyone involved. Sadly, the results did not come back fast enough.
On September 25th, 2006, just days away from his five month birthday and just a day after we had spent the day with friends, Gavin was admitted into the hospital after he had stopped breathing.
That was one of the most terrifying days of my life. My mom and dad had taken Gavin to church, while I stayed home to get ready and go to work. I was in the bath when they were trying to reach me, and my neighbor had to come home and rouse me to tell me to call the hospital. What followed was a blur... the rush to get dressed, the speeding to the hospital, the sight of my baby with blue lips while he was struggling to breathe.
The doctors had ruled out pneumonia and promised that they had called the pediatrician. They said that things were fine, and I reluctantly left Gavin in the care of my parents. I didn't have days to miss, and my job was my livelihood that kept my baby fed. I called and checked in, and tried to hide my distress at work. However, my team lead and coworkers knew, and they graciously sent me to be with my child.
By the time that I had made it back to the local hospital, they had moved Gavin into a room and made plans to keep him over night. The pediatrician still had not come. The next few hours felt like a life and death struggle. He was barely breathing and looked so blue. There were times that his alarm went off, and I had to run and find a nurse to get someone to attend to him. The pediatrician finally arrived to find that he had been misinformed of the situation.
That's when things started happening. Plans were made to move Gavin to WVU Hospital. An ambulance was coming, and there were hushed conversations between doctors and nurses in the hall.
After that night and the sullen ambulance trip, I lived in the hospital. I watched my son die and be revived three times. The hours blurred together - sleeping, eating, and existing were all placed on hold for meetings with doctors and nurses and spending time with my son.
Three days after arriving at the PICU at WVU, we got the crushing blow delivered from an apologetic geneticist. Gavin had Spinal Muscular Atrophy Type I, and if he lived beyond the age of 18 months, we would be lucky. She gave us all the test results and documents we needed to be informed, but I already knew the truth that was hidden within.
Suddenly, I was faced with choices that no mother should ever have to make - the signing of a DNR, the type of feeding tube that would be best, when to do the operation for said feeding tube, and the use of things to help keep him from choking again. We were preparing to fight until the bitter end, and life was slowly starting to take on a new routine. I was now alone in the hospital without my support - they all had to return to work.
That, sadly did not last for long.
On October 3rd, 2006, my worst fears came to life. I left the room to go get some lunch for myself, and when I returned, there were nurses surrounding Gavin's little hospital crib. They were talking about scares and the monitoring machine being wrong. Now that I was back and more than a little shaken, they left me to be with my little boy. They weren't gone for long. In fact, I had barely started to eat when Gavin stopped breathing again.
The nurses rushed back in, and I was ushered into a doctor's office. The time I thought that I would have before needing to face the DNR was now gone, and I was being asked if I wanted to force my son to live or let him pass on to a life that would be better. I don't even remember the exact conversation that I had with the doctor or even the doctor's name and face, but I remember telling my mom that she and dad had to get to the hospital as soon as possible, and that they shouldn't ask me why.
My whole family came with her and my dad - brother, aunt, uncle, grandmother, cousins, and friends. Time was standing still, and we were waiting for our pastor to arrive and trying to act like this was anything but one of the most gravitational moments in our lives. When he came, we prayed for God to be with us, to comfort us, and to ease the pain that Gavin was in. Then, I was given my son to slowly rock into his final sleep. I don't know how long I sat there and sang to him and rocked him. For all that I know, it was a lifetime or longer until the nurse took him from my arms and we were taken from the hospital to do the one thing that we had not prepared ourselves for - go home without him with us.
Losing Gavin was the most horrible pain that I have ever suffered. A mother should never have to bury her child, especially not a child so young. For a little more than a year, I have endured quietly. I have written letters and hoped for change. However, I do not see a fruit coming from my efforts. There is a bill in congress that is still waiting for a vote. The members of the HELP committee have not responded to any letter or email that I have sent, and I do not feel that Gavin has had a voice in this. So, I have made it my goal with this blog to give my son the voice that he deserves. This blog is just the first step in that voyage of knowledge and healing.
