My daughter’s medical information is scary. It has words like chronic and terminal. Add that to the fact that her orphanage has never had a child with her diagnosis live past the age of 14, and you start to really get a grim picture of her life.
Now, wipe all of that away, because it’s wrong. My daughter is thriving. She does all the typical things a girl her age does: artwork, riding her bike, and babysitting. Looking at her you’d think she is a normal, healthy 14-year old girl. I am not the mother of a dying child. I am the mother of a happy, silly, smart, energetic teenager!
Naomi was adopted at 10 years old from Guangxi, China. She had been waiting four years for a family. I will never know how many people chose not to adopt her after reading her medical report, which included the diagnosis of Beta Thalassemia Major. In her orphanage, that’s a death sentence. In the United States, it’s not.
People with Beta Thalassemia Major have bone marrow that does not make healthy red blood cells. Red blood cells probably live about 42 days. My daughter’s only live about seven days. That’s a big problem because red blood cells carry oxygen. Without enough oxygen moving through her body, she gets tired and takes a lot of naps. Her bone marrow is always working in overdrive to make more red blood cells. And her bone marrow working overtime makes her bones very brittle and easier to break. Her bones also start to hurt because the marrow is swelling in its attempt to make enough red blood cells.
Her bone marrow will never be able to make enough red blood cells to catch up.
The only way to give Naomi a healthy life is to give her blood transfusions. Every three weeks, she goes to see her Hematologist. (This man has become a member of our family! He monitors her medical condition, but mostly, he monitors her happiness. He is very focused on giving her a “normal” childhood.) He checks her blood counts and coordinates her blood transfusions with the hospital.
Two days after she sees her doctor, Naomi goes to the hospital’s transfusion center. This is technically a part of the hospital, but the people in this center don’t usually act sick. The kids are all watching movies, doing homework, creating art projects, playing with someone from the Child-Life Department, or racing cars up and down the halls. Naomi enjoys her day at the hospital!
As Naomi gets older/taller, she will need more blood. She currently gets 2.5 units of red blood cells every three weeks. Even with that much blood, her blood counts are still lower than it should be, but it is enough to keep her feeling healthy, eliminate her need for naps, and allow her to grow into a healthy adult.
Whenever you donate blood, the phlebotomist makes sure you have a high enough iron level. High iron is good for you, but it’s bad for Naomi. She already absorbs the iron from her food, and she also gets iron from all of her blood donors. That’s a lot of iron floating around in her blood. Every day she has to take pills to help her body eliminate the extra iron. These medications can have severe side-effects and need to be monitored closely.
Naomi also sees an Endocrinologist every six months. This is to ensure that she is growing and hitting all of the developmental milestones that a healthy 14 year old should be achieving. So far, she’s doing great!
Every year, I take Naomi to a Thalassemia Specialty Clinic in Oakland, California. (There are other clinics around the country, but we choose to take her to this one.) They look over all of her lab work from the past several months and coordinate a treatment plan with her local hematologist. Since they are the experts in her disease, it’s extremely valuable to have them on her medical team.
We spend three to four days in doctor offices each month, but it has become part of our schedule and isn’t a big deal anymore. It’s just part of Naomi’s schedule.
She is growing. She is smart. She is healthy. She is amazing.
Resources:
Cooley’s Anemia Foundation
Oakland Children’s Hospital’s Thalassemia Center
– guest post by Annette
Awesome. Thank u for sharing about how great life can be with thassalemia major.
I love your beautiful heart. I love all your girls, they are all amazing and they take after their mom. Naomi is a rock star. I am so proud of how she finds joy in the journey and teaches us to be like her. Gooooo Naomi!!