Posted by
CJ Good on Monday, February 26, 2007 12:03:15 AM
First and foremost I wish my condolences to the family ofDamien Nash. It is always a sad story when you hear about somebody of his age who just collapses and dies. I remember finding out the morning about Hank Gathers death the morning after, and how I have never have lost that image of his collapsing on the basketball court during the West Coast Conference Tournament in 1990. However, for a football player who I have never heard of until today, there may never be another professional whom I have more of a connection with than this man.
On January 15, 2007, my life has forever changed. I had dropped of my kids at day care that day as normal, but since it was MLK day there was no traffic in getting to work. As I arrived to the office, my phone rang and the daycare informed me that my son Aidan was in need of medical attention. They asked if I would rather get him and take him to the ER or have them call 911. I told them I would be there shortly since traffic was very light. When I got to my car, I called the daycare to inform them I was on the road. At that point they said they had already called 911. A 30 minute drive took forever, and I arrived at the daycare ten minutes later to see Aidan having what was later described as Grand Maul Seizure.
At the time the paramedics were concerned of a possible aneurism, menigitis, or some other infection. The paramedics took us to the nearest hospital, where they quickly had at least twenty medical attendants in the room an hospice literally sitting on top of us. After two hours of procedures they decided that he was stable enough to transfer him to San Diego Children's hospital.
They were not sure what he had, but they were sure the seizure was due to some sort of infection. However, the fever never came. Yet, their was an x-ray indicating he had a severe case of pneumonia. At that point the ICU doctor had a neurologists and pomologist to see him.
Tuesday morning the ICU doctor came in to tell us that he was going to be released the following day, after his MRI, and the Neurologist observed him. When the neurologist came in, Aidan was sleeping. He said that Aidan did not need to be awaken as he was only going to check his vitals and some responses. In listening to his heart, he started to put his focus on it. He would casually move to his other quick tests that did not involve a machine. He went to the ICU doctor and told him of a click in his heart. The ICU doctor thought he was crazy as he never heard it. However, when he came in to listen he said that I do hear a murmur. Cardiology would come in later that day.
The cardiologist would come in later in the day, in fact it was after 8 pm. I noticed that after he listened to Aidan he was immediately concerned. He spent the next 45 minutes observing his actions through the glass wall, while he was reading. Eventually, he would leave followed by an Army of Cardiologist the following day. Within 48 hours Aidan had every heart test possible done on him ranging from an EKG to a Heart Cathador, including a biopsy.
Friday came with the possibility of open heart surgery. The concern was that he had a really bad valve that needed immediate attention. We were being prepared by the entire medical team that he might need it by that night and they had an opening if needed. That morning the lead Cardiologist came in the room and indicated that the valve was not that bad, but the heart was thicker than expected and that was creating the click in his heart. We were told he was in no mortal danger, but that there were would be further follow-ups. He also told us to be very careful of who he was around as he would not be able to get sick, due to the medication he would be put on. The medication would not solve the thickening heart but that it would thin the blood and the spot which looked like pneumonia was actually built up blood in his lung.
After discussing this with my wife Maggie for a few moments, I left to my work to tender my resignation since Aidan would need to be at home full time. We are on my wife's insurance and I was working in a commission job for a company which was really struggling. While I was at the office, I get a phone call. Maggie was stone cold and said I needed to hurry up, I asked what was wrong. The lead cardiologist came back in, and was asked by her how do you fix this issue. He responded you do not, and that he will need a heart transplant at some point over the next twenty years.
We were all in shock, as we did not know what the issue would lead to. But the question always came back to how could our son who was in relatively good health need a transplant of his heart. How do you react to that? It was just shocking. My son has a condition called Cardiomyopathy Restrictive. It is the rarest of rarest heart conditions in kids. In fact less than 5% of the 50,000 kids alive in America with any form of Cardiomyopathy are diagnosed with the restrictive version. To be short, his heart does not slow down after activity, plus it is turning into scar tissue. There is no medicine or procedure short of a transplant to stop this. While the doctor originally stated it could be 1 year or 20 years, the reality is closer to 1 than 20. Close to 50% of all kids face mortality or a transplant within 2 years of diagnosis, as it can rapidly proceede.
Damien Nash is now a hero of mine. Apparently, this man knew he had a version of it, while not restrictive. He did not let it stop him from fulfilling his dream. He lived his life to the fullest, and even was at a fundraiser prior to his collapse at home in front of his wife and child. I am not sure if the children were his wife's from a previous relationship, or they were his. However, she has lost one child to this horrific disorder and another who has already received a transplant. My prayers go out to her and their children. I wish them my condolences, and know what will be coming in my life.
I only ask for one thing from people. Their prayers as I can only qoute the words of King David "For some trust in Horses and chariots, but I must put my trust in God". Doctors have done better with this disease, yet they are not God. I pray that whatever happens to my son, that he will live life to his fullest and have an impact on the world that his father could only dream of having.
That is why I have stayed away from writing, as it hit to close to home. However, after the news of today, home meant writing of what this awful heart condition can due to kids and families. As my son has a condition which is considered to be terminal, it is my heart which feels like it is failing.
***update: The two boys are not the offspring of Damien or his wife Judy, they were his brothers. Up to 25% of all cases are known to be genetically caused, while the other 75% are not necissarily known, while there are possibibilities. I feel for his parents, as I now know their pain to an extent.