Here is a little bit about my medical journey prior to my first transfusion and receiving the diagnosis of Diamond Blackfan Anemia. I was in and out of the ER from November 2018 to April 2019 with respiratory episodes that were not successfully treated at home. The doctors continued to give me the diagnosis of Viral Bronchiolitis, do a second breathing treatment (I always had one at home before going to the ER) and send me home. My mom was never really in agreement with this diagnosis because most of the time I was the only one sick while the rest of my family was healthy.
On April 20, 2019, I was really struggling to get air. My mom gave me a breathing treatment as well as trying some natural remedies to relax my respiratory system. Nothing worked. She called the advice nurse and explained the situation, including the last five or so months of these episodes and ER visits. The nurse advised to go to UC Davis Children’s Hospital. So, away we went!
Truthfully, my mom was expecting another breathing treatment and to be sent home, but that is not what happened. When we were finally in an ER room, the doctors assessed me and decided to put me on some oxygen to see if it helped. I ended up needing high flow oxygen, which required admittance to the Pediatric Intensive Care Unit (PICU) overnight at least. My mom, being unprepared for an overnight PICU stay, called Marmie (Grandma Compton) and asked her to bring her some stuff. Marmie stayed with us after I was moved to the PICU room. Throughout the night, I was slowly weaned off the high flow oxygen. By morning I was off the oxygen completely and headed home to celebrate Easter with my family! YAY!
My mom and Marmie noticed I was listing my head to one side and my eyes still looked super sick. A few days later, I followed up with an interim doctor, who just rushed through the exam due to focusing primarily on paperwork and if my vaccines were current. Marmie thought I had an ear infection. My mom agreed, but also thought something else was wrong. After doing some more research on my symptoms, my mom found that Iron Deficient Anemia could be a possible diagnosis. Marmie and my mom discussed this possibility and decided to request a blood test with my new doctor (we were still trying to find a good doctor who was taking new patients with our insurance). I ended up spiking a high fever on April 28, 2019, so my mom took me back to UCD ER. She asked the doctor to do a blood test and explained my medical history and what she had researched. The doctor did an exam and discovered I did, in fact, have an ear infection. My mom still requested the blood work because her gut was telling her there was more going on with me. The blood test revealed that I had Macrocyctic Anemia, meaning my red blood cells were enlarged. (In adults, this typically means there is a vitamin B12 and Folate deficiency. In children, this typically means there is an underlying condition causing the red blood cells to enlarge.) I went home with antibiotics and the advice to follow up with my PCP and do more labs.
My mom starting researching Macrocyctic Anemia and all the possible causes. (None of which were Diamond Blackfan Anemia, specifically) I was finally able to be seen by my new doctor, Dr. Collins, for the first time on June 12, 2019. He did a First Year Well Baby Check and order labs (a lead level, comprehensive metabolic panel, vitamin B12/Folate level, & complete blood count). He said we would get the results within a week or two. We went to the lab and got the tests done and then went home. Dr. Collins called my mom that afternoon and said to take me to the ER as soon as possible for a transfusion. “It cannot wait for tomorrow.” My hemoglobin was dangerously low at 5.7 (the normal range is 10.5 to 13.8). So My mom hung up the phone with Dr. Collins and immediately called Marmie and gave her the information. Marmie, Papa (Grandpa Compton), Daddy, Mommy, and myself all went to UCD ER, again, to find out what was going on and to get some treatment options and my first transfusion. My brother, Remi (“Memi”), and my sister, Cadee (“Taydee”), stayed at home with Aunt Talia, Uncle Jacob, Uncle Samuel, and Uncle Micah.
Well, this is all I have for the “brief” backstory leading up to my DBA journey of transfusions, steroids, numerous blood tests, numerous finger sticks, and much more. Please see the updates from June 12, 2019 to present day for more or my story and current information. Also, please check out my photo gallery for some extra smiles and laughter! God bless you all deeply!
