Our oldest daughter Gracelyn was born April 16, 2008. Aside from moderate jaundice, for all we knew, she was a healthy little girl.
After her first 6 months, her growth started to rapidly decline. Around 9 months, we switched pediatricians, and at 12 months, lab work showed abnormal hemoglobin levels. Gracelyn was admitted to the hospital for the first time shortly after her first birthday.
The doctors were stumped, as anemia wasn't causing the problem. She received her first transfusion and was given the diagnosis of failure to thrive.
Our first hematologist didn't pursue answers. We were sent to an endocrinologist to test her growth hormone. Her hormone levels were fine, and the endocrinologist said he couldn't help us.
Finally, 18 months later, after multiple tests, routine lab draws to monitor hemoglobin levels, and a couple more transfusions, we found a hematologist willing to help.
After meeting with her one time, she said she felt she knew the problem. A lab test proved her right: Hereditary Spherocytosis. A blood disease we had NEVER heard of.
Gracelyn's case was severe enough that the hematologist suggested surgery to remove her spleen. At age 2.5, Gracelyn underwent a splenectomy at KU Medical Center in Kansas City.
Since her surgery, Gracelyn's growth patterns have increased, as has her energy levels. She hasn't needed any more transfusions, though she has been hospitalized twice with extreme fevers.
If you have questions for our family regarding HS, we would be happy to communicate with you. Please email us at justsblogs @ gmail .com.