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Don't Let The Disease Have Them!
Greetings from the Windy City Chicago.
My name is Tamiko and I have a daughter 15 years of age who has sickle cell disease. She was diagnosed at birth through newborn screening. My initial feeling about the diagnosis was shock. To my surprise, the shock wasn't from reading the letter stating my daughter tested positive for sickle cell anemia; but the shock of " how could this be." I knew my daughter's father was a carrier of the trait and I also knew that I "had" the trait. You see when I was ten years old, my mother and I were told I would grow out of having the sickle cell trait. So, imagine my surprise when I read the newborn screening letter.
After her birth, my daughter remained in the hospital for an additional 2 weeks due to jaundice and suckling issues. Her confirmatory test was done in the hospital of which she was born. There was no genetic counseling, no doctor telling me she needed to be followed by a hematologist, and there was no coordination of care. There was nothing! I thought I had the skinny on sickle cell. Why? My mother has the disease as well and over the last 20 years, I dealt with my mother's health issues and treatment plans. I felt prepared and ready to take on this familiar but new challenge I faced. But, having a child with the same disease is totally different, emotionally and physically.
Here I sat with this infant that couldn't talk nor communicate in any way except crying, indicating to me she needed me. I was a nervous wreck. It's almost like your life is at a stand still. I was a full time student and a full time employee, and due to the illness and complications from the disease, I had to stop working and going to school. On this journey, I have been dismissed from several jobs due to my child's health condition. I felt as if this was my punishment. I should have know better, but that's hard to do when my mother didn't even know her hemoglobin type or the fact that her disease was genetically inherited.
My daughter was about 1 year old before she was seen by a hematologist, at the behest of an aunt, who also had a child with sickle cell disease. I found it appalling that my daughter's primary healthcare provider (PCP) never instructed us she needed to be on penicillin nor that she needed follow up by a specialist. Once I got her into a comprehensive program, my daughter's hematologist, Dr. Uma Subramanian, and her nurse, Patricia Bailey, guided me and empowered me to be an advocate for my daughter and to be proactive in her care. If I could give some advice to new parents with children with this disease it would be.....Be champion and an productive advocate in your child's care.
1. Know their hemoglobin type.
2. Know your child's baseline.
a. Red blood count (rbc)
b. White blood count (wbc)
c. Retic count
d. Oxygen saturation (O2 sat)
3. Push water intake.
4. Make sure your child receives adequate rest.
5. Let them be "normal" kids.
Yes, your child has a disease; but don't let the disease have them.