ALEXANDER SCOTT LIEBER
January 22, 1986 - December 21, 2003
Alex was born on Wednesday, January 22, 1986 at 8:52 a.m. weighing in at 7lbs 3 oz. and due to my planned C-section, he was just beautiful. Perfect in every way. He would eventually become our middle child and our only son. While still in the hospital waiting to be released, doctor’s diagnosed Alex with a hereditary disease called Type A severe Factor VIII Hemophilia. We were stunned. Where did this disease come from? We later found out that I carried the gene for the disease and never knew it. Boys have a 50/50 chance of getting the disease and girls have a 50/50 chance of being carriers and passing it on to their children and no one else in the family had Hemophilia or were carriers that we knew of.
We took Alex home from the hospital and while I settled in as new mom again, my husband Jim started studying up on the disease trying to learn everything he could. What we did learn was that Alex would never be a normal boy. Never know what it was like to climb trees, jump from a fence or play in sports. He would require testing and blood work to be done every six months by a Hematologist, and that if he bumped himself, he would need to be infused with factor 8 to help clot internal bleeds and the worst part of it all would be that he would never know what it was like not to be in pain. Hemophiliacs are in constant pain due to all of their joint and muscle bleeds. As the blood collects in the joints they swell until factor 8 is given to stop the bleeding. They just keep swelling till they are in so much pain, it’s intolerable. As a young child that cannot speak, he couldn’t tell us when he was bleeding. We would have to watch every move he made to see if we could detect a bleed. We got so good at it that we could tell just by watching him walk or how he held his arms. I could tell if he favored a specific part of his body and would ask, Alex, do you have a bleed in your leg or arm? He would try to hide it, but we always knew if he had a bleed and needed factor 8.
Finding a pediatrician in our area was almost impossible. They just didn’t know enough about Hemophilia to take the responsibility of having him as a patient. Eventually we found a wonderful pediatrician who would watch him grow up and not be afraid of the disease.
When he was 3 or 4 he got very sick. He was running a fever and I called his pediatrician. He wanted to see him right away and once in his office he wanted us to go to the emergency room in the next building. At lunchtime we met his pediatrician in the ER. He wanted to perform a spinal tap to check for Meningitis. I called the hematology group to let them know about the tap. Their only concern was that Alex had enough factor 8 in his system to get through the procedure. While performing the tap they put Alex in a fetal position, while doing that they gave him a liver bleed. We had no idea and it went unnoticed. The test came back negative for Meningitis. His pediatrician performed an X-ray and found pneumonia and immediately started antibiotics. The pneumonia got better, but Alex didn’t. The bleed was taking over and the doctor’s didn’t know. He ended up in four different hospitals in three weeks’ time. He was dehydrated and very sick and losing weight. By the time he made it to the last hospital, they decided to perform an HIV test. That was the longest 10 days of our lives. The test came back negative, thank God. Right after that they found out that he was bleeding in his liver from three weeks ago and started treating Alex with factor 8. He soon recovered and was home again getting stronger. Once again he beat the odds and came through.
When he was approx 5 we noticed that he wasn’t growing and took him to another specialist to check his pituitary grand. He wasn’t producing growth hormone, so at 5 he started taking growth hormone shots everyday until approx 16 years of age. He took one shot or another every day of his life, sometimes two or three. He was the bravest child, braver than I could ever be.
Hemophilia never got him down. He was incredibly smart. At the age of 5 he put together a free standing kitchen set for his two year old sister that included lights and a ceiling fan that worked with batteries. Later on when he was older he used electricity to light all his projects. We knew he would be an Electrical Engineer someday. He loved light. One of his first words was LIGHTS. When we drove through the neighborhoods looking as all the Christmas lights he would yell with delight, “LIGHTS!”
As he grew up things started to calm down with his disease. He was able to infuse himself with factor 8 if he needed it and we sure were more relaxed knowing that he was able to deal with his Hemophilia on his own. We were even becoming more relaxed when he traveled with friends or neighbors on trips out of town. He was growing up and starting to pull away from us. We were so very proud of him and the accomplishment he had made in his life.
Every year since he was six he attended a week long camp for kids with Hemophilia. Camp John Marc in Meridian, Texas meant the world to him. He absolutely loved going to this camp because it meant that he could be parent free and safely do some of the things that normal kids do everyday. His dad and I would hold our breath until he came home, usually very dirty and hoarse from spending the week yelling and screaming and having a great time with his friends.
When he reached the max camping age and could no longer attend camp, he decided to become a camp counselor and started in the camp leadership program. Upon graduation at age eighteen, he would be able to counsel other kids new to the camping experience. He couldn’t wait to continue on at John Marc as a Hemophilia camp counselor.
On Saturday, December 13th, 2003 Alex started with sinus and allergy symptoms. He had had many sinus infections in his lifetime, so this was just one more incident. He was scheduled for surgery the following Friday the 19th to remove the port-a-cath in his chest, so we were fighting this sinus thing tooth and nail with over the counter meds and warm salt water rinses. He started getting better by Monday and was able to go to school. It was the last week of school before Christmas break which meant he would have finals most of the week. On Wednesday he came home for his lunch break and told me he didn’t feel well enough to go back after lunch, so I told him to just stay home and rest and that I would call the school to let them know that he wasn’t up to returning that day. With his surgery just two days away, and Alex not feeling up to even going to school, we felt it was time to cancel the surgery until he recovered, so I made the phone call to Children’s Medical Center, Dallas to postpone till after the holidays. On Thursday he woke up still feeling bad, but had no other symptoms except some pain over his left eye. I called his doctor to schedule an appointment to be seen, but they were booked up till Friday, so on Friday December 19th we arrived at the doctor’s office at 2:20 that afternoon.
As we walked up to the building I noticed Alex rub his nose with his hand and sternly told him to not touch anything while in the doctor’s office. I remember telling him that you never know what diseases you can pick up. Boy, those words would come back to haunt me in the next few days.
Alex was in good spirits and still only had the one symptom of pain over his left eye, no fever, no weakness, and no other pain. The doctor gave us a prescription for an antibiotic and ordered an x-ray of his sinuses. Just as we thought, he had a sinus infection.
That evening he didn’t feel up to eating dinner, but was well enough to play ball in our back yard with our dog Casey. As we look back on this, we felt it was his way of saying goodbye to her. He still had no other symptoms, but sometime after 8:00 pm he started to vomit, we thought it was because he had taken the antibiotic on an empty stomach. By 10:00 he had complained of feeling weak. I mentioned to him that maybe he was coming down with the flu which was going around the school and our area. I checked him for fever, no fever. I asked him if he felt worse or if he felt like he should go to the emergency room, but he said no. I told him if he still felt bad by morning, I would take him to the hospital. I kissed him goodnight on the forehead and went to bed. At 11:00 his dad checked in on him and still no fever. He talked to him for a little while and he went to bed.
We share a wall that divided our rooms and at 1:45 am Saturday morning I was awakened by three bangs on the wall. I went to his room thinking that he needed me for water or medicine. When I reached his room I called out in the dark, Alex, Alex. No answer. I turned on the light and found him on the floor between his bed and the wall in a fetal position. I ran to his father and yelled to go to him while I called 911. His dad threw the empty bed across the room and held Alex in his arms while calling his name. No response, Alex could only moan.
Paramedics arrived and immediately started working on him. By this time he had a fever of 105 degrees. It took them forever to get him stable enough to head to the hospital. When we arrived the doctor wanted to perform a spinal tap, just as before we heard those two words again. He knew it was Meningitis and the test came back positive. They took us to a family room and we waited for reports. We still remember the exact words of the ER physician. “Your son’s condition is grave. He may die from this.” They told us that Alex needed to be put on life support and taken to ICU. We were in shock. It was as if all of the air had been sucked out of the room. He had just seen the doctors the day before and we were told it was only a sinus infection.
We immediately started calling family; it was now 3:00 am on Saturday. By Saturday afternoon the visiting room of the ICU was packed with friends, family and neighbors. By the evening word had spread throughout the school and friends from high school had started arriving.
That evening doctors had tried to stop the pressure that was building in his brain by inserting a tube. Nothing was working, they were performing test after test, but Alex wasn’t getting any better. He couldn’t regulate his body temperature and we realized that his system was shutting down.
We were up all night Saturday night into Sunday morning laying by his side and talking to him. Friends would sit with him and talk to him and pray. We were grateful for the company, but were walking around like zombies.
On Sunday morning doctors checked on his progress and performed an EEG. There was no brain function. We had to make the painful decision to take our beautiful son off life support. We gathered our family in a circle in his room and held hands as doctors’ disconnected support. He took a few short shallows breaths and then was gone.
We couldn’t leave him. We each sat with him for what seemed like hours holding him in our arms.
That took place just four days before Christmas, and on December 26th we buried our only son. On January 22 we celebrated his 18th birthday by visiting his gravesite at the cemetery.
What is this disease called Meningitis? How can it come on so suddenly and in Alex’s case with no symptoms? What doctors are guessing is that it entered through his nose probably while he was rubbing it during his sinus infection and once inside it entered his sinus cavity and then his brain.
It’s been four years since his death, but for his father and me it feels just like yesterday. We miss Alex so very much, his fantastic smile and warped sense of humor, his love for people and animals and especially his family and pets. He was truly a beautiful person.
We love you Alex so very much and miss you every day.
|Visit our site www.meningitis-angels.org|