Mom to Gage Warren Pruitt
October 13th, 2008-July 7th, 2009
When our daughter was about 18 months old, my husband and I decided we were ready for another baby. A couple of months later, I got a positive pregnancy test...we were so excited! Morning sickness kicked in immediately and just wouldn't let up. In fact I ended up with a PICC line during my pregnancy so I could receive IV fluids and anti-nausea medicine at home. I was also plagued with a constant nagging feeling that something was wrong with my baby. I had an overwhelming feeling of dread that I was going to lose him. I was so ready for Gage to be born so I could make sure he was alright.
I remember hearing his first cry when he was born. I also remember the doctor saying he was "perfectly healthy." And even though he looked healthy and everything was going well, I still knew deep down that something was wrong. It wasn't very long after he got home that we noticed that his abdomen was getting bigger but the rest of him wasn't. He wasn't developing muscle tone and he wasn't as pink as I thought he should be. When he was about 5 weeks old he started projectile vomiting every ounce of milk we gave him. His abdomen was so big it was taking over his whole body. And then the diarrhea started. After being ignored at our pediatrician's office, we headed to the emergency room. We were there for hours doing test after test that revealed nothing. They admitted us to the PICU for the night. We ended up being there for a week, running more tests. They put him on a special formula that he could tolerate, but there was still something very wrong with him. Finally, we were transferred to Vanderbilt Children's Hospital in Nashville, TN. The day he was transferred, I took my mother-in-law aside and told her that I was terrified that Gage was going to die.
I remember when we got to Vanderbilt that night, everyone was so positive that we were going to find out what was wrong and then fix it. They had all of this state-of-the-art equipment and wonderful doctors. I had no idea how much that place was going to feel like home and how much those people were going to become family to us. Gage had a bone marrow biopsy that revealed storage cells. One of the doctors gave us a very short and sweet description of storage diseases. We were so excited to finally had a path to follow for a diagnosis. We were thinking that he would just need some powerful medicine and then he would be ok. It wasn't until we started doing hours of research on the different storage diseases that we realized that most of them are fatal. At this point, Gage was stable and we were sent home for a few weeks at Christmas while we waited for the test results to start coming in. A month later, we found out that Gage didn't have any of the diseases they tested for. Was this good or bad? We went back up to Vanderbilt for another extensive hour-long ultrasound. This ultrasound revealed that Gage had calcium deposits on his adrenal glands. The geneticist came in and talked to us. He asked us if we remembered seeing Wolman's Disease in our extensive research. The name sounded familiar, but we couldn't remember details. The test was sent to Baylor. The results would be back in 2 weeks. He asked us to not research it online when we got home. Of course, we drove the two hours home and immediately got on the internet. There it was in black and white. Wolman's Disease. Fatal. Usually by 6 months old. Two survivors in the United States. They had received bone marrow transplants. I looked at my sweet Gage and broke down. He was already 4 months old. Was it too late? Two weeks later, the doctor called us to confirm. It was, in fact Wolman's Disease. Gage was missing an essential enzyme that processes lipids and toxins. The transplant team wanted to see us the very next day. Maybe there was a chance...
Gage had his stem cell transplant using donated umbilical cord blood on March 13, 2009. He sailed through the two weeks of chemotherapy and all of the other nasty medicines they gave to deplete his immune system. He did great during those first all-important 100 days post-transplant. He had a few bad days with fevers, jaundice, etc. He received a blood transfusion every other day for almost a month. And on the other days, he received platelets. There were days where he slept all day. But for the most part, Gage remained his happy, smiling self. He loved flirting with the nurses and doctors. We had a routine in the hospital. He loved to sit in his bouncy seat and watch cartoons. His donor percentage was phenomenal! And then we finally started seeing some white counts again! We would soon get to move to the Ronald McDonald House!
We moved into the RMH in April and got to live there as a family of 4 again for more than two months. We went two clinic twice a week to get bloodwork and to be monitored closely for signs of graft verses host which would mean his body was rejecting the transplant. He was taking about 10-12 medicines every four hours. But we got to have a lot of fun together and Gage and his sister got to know each other. We went on walks to the park every day and we even got to take Gage to the zoo. Then it was discovered that Gage had developed an antibody that was destroying his beautiful new cells. So we had to start on another medicine. His platelets were low again at this point with no known cause. We had many times that we were admitted for a few days because he was dehydrated and needed fluids. We lived moment to moment knowing that our bubble could burst at any time. But we were still cautiously optimistic. We sent off THE test to see if his transplant had worked and he now had the enzyme. At this point we were allowed to go home on the weekends. And it was determined that if Gage continued to improve, we would get to MOVE BACK HOME in just a few short weeks! We would only have to come to clinic once a week, so that meant we would make the 4 hour roundtrip drive happily from our home!
We came home for the weekend. If everything still looked good with his labs the next week, we were going to get to move home. I started thinking that maybe we had cheated death after all. Maybe we would just get to keep our precious boy. Maybe my intuition was wrong. But then...Gage was playing on the floor, rolling from side to side for the first time, smiling away. I picked him up and he threw up. Gage did this a lot, but it was still always stressful. I put him down for a nap and he didn't want to sleep which was unusual because he usually loved his naps. He finally went down and woke up and threw up again. We went to my in-laws house where Gage had massive diarrhea and started looking pale. We assumed he would soon need fluids. We came back home and put him to bed. He didn't throw up anymore. But when he woke up around midnight, he just didn't look right to me. My husband and I took turns staying up with him that night. He never went back to sleep and started getting pale and his face looked sunken in. That morning, we decided that I would take him to Vanderbilt. So I loaded him up in the car and off we went. During the 2 hour trip, he progressively looked worse. I got so worried that I broke all the rules and moved his carseat to the front so I could keep a close eye on him. He had a very odd color and had a vacant look in his eyes. I sang to him and rubbed on him. I noticed his heart was going a million miles an hour. Then I noticed he looked splotchy and suddenly, he wasn't breathing anymore. I called 911, turned the flashers on, and started driving as fast as our van would go with the flashers on. The 911 operator was not helpful and basically told me that there was nothing she could do to help me because the ambulance wouldn't chase me so I would have to pull over and just wait for them to get there while my baby was dying. So I kept driving, honking though lights and cutting people off. By the time I pulled Gage out of his carseat, he was dead. I screamed "Help me!" and they took him from me. After an excruciating long time, they were able to revive him. They sent us to wait while they got him set up in the PICU. After several hours, we were allowed to come in. He was hooked up to so many things it was hard to find Gage in there. A ventilator was breathing for him and there were monitors everywhere. They told us not to leave that night because they were afraid he would die. So we stayed there with him. And for the next few days, we waited, watched and listened. Tests were run. Different doctors came in and out with different news. It was pretty much all bad news. Gage had severe brain damage. He had developed an infection in his blood; in his central line. During the car ride to Vanderbilt he had suffered a "cardiac event" and his brain was starved of oxygen. The Gage we knew, that we had poured every ounce of hard work and hope and love into...was no more. Just his body was left. Nine days after he crashed, we had a care meeting. They showed us his MRI and EEG results. I did not understand all of this, but our wonderful transplant team that we knew and loved was there to help us understand. It was time to let him go. It was so sunny in that little room. The room we planned our son's final days in. I remember I wanted to jump out of the window. I was holding a little picture of him. I showed the picture to the PICU doctor and made him promise that my Gagey wouldn't be in any pain. I made him promise as one parent to another. He kept his promise. Tuesday, July 7, 2009. It was time to say goodbye. There are details that I still cannot share from that day. Gage Warren Pruitt died at 11:35 in my arms, as I sang lullabies to him.
We had him cremated with Fuzzy, my stuffed bunny I had treasured my entire life. Gage and Fuzzy are at our
home, where they belong. Part of my heart is in that little urn too.
Mary blogs at gagepruitt.blogspot.com
You can contact her at firstname.lastname@example.org