At the age of 4-1/2, my son, Robert, began to complain about a tummy ache. He would lay down on the sofa and say, “My tummy hurts”. I went through all the normal questions a parent asks and within minutes of complaining of feeling ill, he would get up and go back to playing. I didn’t think much about it. Robert looked fine and was doing his normal 4-year-old thing. This behavior of not feeling well and then resuming his playing went on for a couple of days.
One evening, as my boys were getting ready for bed, my oldest son yelled for me from their bathroom. “Mom you have to come here and look at Robert’s pee, It’s really yellow.” I could not believe my eyes. As we all stood there staring into the toilet, my son asked, “Is it supposed to be that color?”
The next day I called his pediatrician and made an appointment. The doctor had Robert lay down and he felt around his abdomen, within minutes he said, “I want you to go the hospital right now. I’m going to call ahead and tell them you are on your way.” “What?” I asked. The doctor said that Robert’s liver was swollen and that I had to go straight to the hospital.
We were immediately taken to a room where the doctor felt Robert’s abdomen and a nurse drew his blood. I was stunned. I was struck with fear. I asked, “What is going on?” Again, I heard the same words, “His liver is swollen. We are going to take blood and run some tests.”
Robert’s liver count was not at a healthy level. The doctor asked, “Do you think he drank a bottle of liquid Tylenol? How about mushrooms, do you believe he has eaten some mushrooms?”
“Liquid Tylenol? Has he eaten mushrooms? No! Why are you asking me these questions? What is happening to my son?” The doctor said that the blood test showed his numbers were much too high. “We are going to wait two hours and take some additional blood to see where his numbers are. Too much Tylenol or eating poisonous mushrooms will make your liver fail.” All I heard was, “make your liver fail”.
After hours of tests, they sent us home with a gastro specialist phone number that I should call and make an appointment. Our visit with the specialist was the same: a blood test that pointed to liver failure. In the meantime, Robert could not eat because his tummy hurt.
The next morning, Robert called me from the top of the stairs. He was laying on the floor of the hallway at the top of the stairs and said: “My legs don’t work anymore; I can’t stand up.” I ran up, carried him into my car and drove right back to the specialist. I walked into the office with Robert in my hands and said, “Please help me, my son is very ill.” The same doctor that saw him the day before said, “I can’t help him, you need to go to Children’s Hospital in Fairfax”.
We spent a day at Children’s Hospital with Robert getting worse. The white of his eyes were now yellow; a sign of liver failure. As the hours passed, his liver numbers rose higher. The nurse said that we should watch for signs of him getting worse.
When one’s liver fails, your blood will become so thin that it will begin to leak out of your body – from your eyes, your ears, your nose. Part of the liver’s function is to keep your blood at a certain consistency. “Keep an eye on him,” the nurse said as she walked out of the room.
It must have been routine for the nurse to coach the family on the signs of liver failure, but to my husband and I, her words left us with fear. We looked at each other and said, “the blood will leak out? How is that possible?” We were both exhausted. Robert was hardly awake and we were keeping a vigil by his side. I don’t know how much time had passed but I woke up to find Robert in a puddle of blood that was leaking from his nose. Mark ran yelling to the nurses’ station. All I could do was watch in horror the blood pouring out from his nose, like a faucet that had been left open.
Again, we heard the same as before, “We can’t help your son here,” followed by, “We are not a liver transplant hospital.” Transplant? No one had mentioned a transplant before. I had not connected the dots; I mistakenly thought his numbers would get better and his liver would heal. “We are sending you to Johns Hopkins in Baltimore.” Everything was happening so fast. How does a 4 1/2-year-old go from being a healthy boy to needing a liver transplant in a span of one week? In the early morning hours, an ambulance transported us to Johns Hopkins.
Robert was in the final stages of liver failure. A few hours after arriving at the hospital, he was placed on life support and moved to the top of the list for a liver donation. We were offered a liver from California that was HIV positive. With no positive assurance that Robert would survive the day, the doctor suggested we find a family member to donate a portion of their liver. There was not enough time to wait. Mark was a match and was immediately prepped for surgery to remove a partial lobe. The doctors told us that both Mark’s and Robert’s livers would regenerate to the size each of them would need.
I could not bear waiting for the elevator; I ran from the 4th floor (where Robert was) to the 8th floor (where Mark had been admitted) to check on each of them. Each time I went from Robert’s room to Mark’s room I stopped in the chapel to pray. I was not ready to accept what was happening to Robert. I prayed to give me the strength to continue to run from each room and not to take Robert from us and not to take Mark from me. I finally asked the Lord to give me the strength to accept what was coming.
I was making myself crazy, running around trying not to speak to anyone of the many family members that had gathered in the hospital. On my last visit to the chapel, before they would take Mark into surgery, I broke down and cried. I prayed for strength to accept what was coming and to give me peace of mind.
As I was kissing Mark goodbye and assuring him that all would be all right, my cell phone rang. Robert’s doctor called to say that they had found a liver donation right in the same hospital that we were in and that they were going with that liver and were going to put Mark on standby in case the liver that was donated had too much trauma.
Robert received a liver from a family that was hit by tragedy when their 8-year-old son was killed in a car accident. If it wasn’t for that family that decided to donate their son’s organs, my son would not be alive today.
That day, the 8-year-old boy saved seven lives by donating his organs. His liver, his heart, his retinas, his skin, his tissue and countless other small arteries went to other kids that had been waiting for a donation.
I had no idea that adults and children die every day waiting for an organ donation. Every day, family members die without checking the organ donation box and every day someone dies while waiting for an organ donation. I want to bring awareness to organ donation and stress how important it is to help save another life this way. My husband was spared and our son lives because that family checked the box.
By: Sally Garcia Crosen