Living with Sickle Cell: Saniya's Story
Living with sickle cell disease can be difficult and often times unpredictable. Explaining the condition to a child can also be challenging. A few years ago the Hackworth’s found themselves doing just that, after learning the results of their youngest daughter Saniya’s newborn screening.
Rogelle, Saniya's Mom: "We were literally looking outside the window, and when you have a full moon that’s how your red blood cells look. And then I said, but that moon the way it’s shaped right now, it’s like a crescent. And when it’s shaped like that, you don’t have as much oxygen flowing through your body."
Over time, crescent moon shaped blood cells can lead to stroke or organ damage through extremely painful cumulative periods known as crisis. Being proactive and avoiding the triggers that cause this, is key to being healthy when you have sickle cell disease.
Rogelle: "How you go about your daily living is different. We would just take our kids to the park and put a light jacket on and not think anything of it. If we’re taking Saniya… how strong is the wind? How long are we going to be outside? Some people might think I’m over the top with it, but I’d rather that than be in the hospital."
It wasn’t until Saniya was 6 months old, after running a fever that she needed to be taken to Cincinnati Children’s for care.
Kenyon, Saniya’s dad:”When you have a fever of 101 degrees and you have sickle cell, it’s considered a medical emergency. So we ended up going to the hospital and we spent that night, her first Christmas night in the hospital. Over the next 13 weeks we were in and out of the hospital 11 times."
To help her create more healthy red blood cells, Saniya’s hematologist suggested a drug called hydroxyurea. It wasn’t an easy decision, but Saniya’s parents agreed to let her participate in the research study at Cincinnati Children’s and she began taking the medication at 9 months old as a patient in the Comprehensive Sickle Cell Center.
Kenyon: "Maybe there’s something else that comes along in a few years, but for right now, hydroxyurea seems like the best bet."
Rogelle: "And she takes penicillin as well and she’s now at the age where she comes to us and says “is it time for my medicine yet?”
Girls playing on slide, Saniya: "It goes very fast." Laughing.
Kenyon: "The one big hope is that one day we can find a cure for sickle cell disease. For Saniya that she can grow up, do, be, have anything she wants."
Rogelle: "So she says she wants to be a doctor and a ballerina, and she asked us the other day “can I do both?” I said “you sure can!
