I arrived at the hospital just as Rob was being pronounced dead. Attendants escorted us into a cold room where my son was lying on a slab. They expected us to say goodbye. Nothing seemed to move around me. The world stood still. I vaguely remember a victim’s advocate holding my hand, the only thing keeping me from hitting the floor. It seemed like my feet were nowhere close to the floor.
As the sheets were pulled back from the “apple of my eye,” I ran from the room sick to my stomach leaving my husband alone to deal with this surreal scene. I watched from the hall as Bob combed Rob’s hair with his fingers, kissed him and said, “I love you Buddy.” I knew I had to go back into that awful room and face my son. I looked past the tubes at my baby boy and the only thing I could see were his gorgeous blue eyes. His eyes, the size of saucers, were still wide open. I thought to myself, how can Rob be dead? He’s looking right at me.
That day was far from the beginning or the end of my battle with this dreaded enemy. You see, I too had hepatitis C. I was diagnosed in 1996. Did I unkowningly pass this disease on to my only son? I’ll never know for sure, but odds are he probably did contract it from me. Try living with that guilt. I had blood transfusions prior to his birth in 1977, and could have already had it when he was born. I also had transfusions after both of my children were born.
Hepatitis C is a disease that gets very little publicity. Not enough movie stars, rock singers, or famous athletes have admitted that they are infected with this malady. What’s sad is they may not even be aware that they have hepatitis C. Most people don’t have any symptoms until it’s too late and their liver is destroyed. HCV is a very sneaky virus and can lie undetected for many years.
Rob found out that he had hepatitis C following 911 when he and his sister, Mandy, went and stood in the rain for eight hours to give blood. Like so many others, the two of them felt like they needed to do something to help.
On October 5, 2001, Rob received a letter in the mail from the blood bank thanking him for the effort, and informing him that they could not use his blood because it was contaminated with Hepatitis C. Not exactly the best way to find out you have a deadly disease. None of us knew that he too would be a tragedy associated with 911. I have often wondered if his heart was already sick. And, did standing in the rain for hours make it worse?
Rob, needless to say, was scared. He went to the doctor the day before his death, October 9, 2001, to get the results of a second test that confirmed that he did indeed have HCV. At the time, he was sick with a fever and cough. He was given a cocktail of medication that mixed in a deadly way with his current medication. (At the time, he was on prescribed meds for manic depression, also known as bi-polar disorder.)
Unbeknownst to us at the time, Rob also had myocarditis (inflammation of the muscle tissue of the heart). This was discovered in the autopsy. Combined with that, the HCV and all the various drugs in his system, he did not stand a chance. His big, healthy looking body was not capable of surviving the collision with that freight train.
If Rob had known earlier about his hepatitis C, his death probably could have been prevented. The important thing about knowing your hepatitis C status is that are certain things you can do to keep your liver as healthy as possible. Certain medications (even over-the-counter) can be harmful to the liver when you have HCV. Also, alcoholic drinks can weaken the immune system and the liver even more. It’s like adding fuel to the fire.
There is treatment for hepatitis C that has been known to cure it in 50 percent of the cases. I myself have been on treatment twice, but I’ll save that adventurous story for another time. My son never got the chance to find out if he was even a candidate for treatment. When Rob did find out he was positive for hepatitis C, he insisted that his wife, father and sister get tested. All three of them are negative.
It is time that somebody stepped-up to the plate and worked toward educating the public about how devastating this disease can be. It knows no age, sex, nationality, sexual orientation, or class. My family is your average, white middle class unit.
Here’s how this disease is transmitted:
- Receiving a transfusion of blood or blood products before 1992
- Sharing needles to inject drugs (even once many years ago)
- Receiving a tattoo or having a body part pierced with a non-sterilized needle
- Sharing a straw to inhale drugs. Small amounts of blood on the straw may spread the virus
- Accidental sticks with used needles or other accidental exposure to blood
- Sharing personal items such as razors, nail clippers or toothbrushes
- Being born to a mother with hepatitis C
Although not a common mode of transmission, HCV can be spread sexually. If you answered “yes” to any of the above risk factors, then I beg of you to get tested immediately. If I can prevent just one parent from experiencing my nightmare, then Rob’s death will not be in vain.
I think of all those college-aged kids who believe they are immortal. As you can see from the pictures, Rob weighed 250+ lbs. and could have played linebacker on any college team in the country. My son "looked" to the naked eye perfectly healthy. He had gotten married, graduated from FSU with a degree in Information Science, and was getting ready to start the job of his dreams. The day he died, all of his dreams died with him.
When you lose a parent, you lose your past. But when you lose a child, you lose your future. There will be no grandchildren to remind me of Rob. I won’t be able to look into a child’s eyes and see Rob’s baby blues, or hear his voice when they sing. I know I’ll never forget what he looked like, but I hope that I’ll never forget what his voice sounded like. I remember on 911, when Rob called to see if I knew what was happening. Right as I picked up the phone, the second plane hit the World Trade Center. We all knew then that our lives would never be the same. I didn’t realize just how different mine would become.
Even though the pain of Rob’s death still stings, my faith in God has made me realize that all of this has happened for a greater purpose. My goal now is to educate others about this disease. You can see what hepatitis C has done to my life. I know that I can’t save the world, but at least I’m going to try. October is National Liver Awareness Month. Don’t let hepatitis C attack your liver. Get tested…for Rob’s sake.