Black Star Girl

As a tribute to the struggles of two parents in caring for their daughter and son; we include the following excerpt from the memoir Black Star Girl, by Marva Woods Stith. Please visit her web site, ( where you can learn more about her story.

Seventeen months after we welcomed our first child, my loving husband and I brought our new son home from the hospital. Joining his big sister, he made us a family of four in the spacious upstairs portion of the two-family house we rented on Lexington Avenue in St. Louis. The birth of John Darin Stith in December 1961 blessed us with two bright, adorable children.

Then on a hot St. Louis summer day, we learned about sickle-cell anemia, a genetic health condition for which there was no cure. Darin was eight months old. His little hand was swollen, and nothing we did gave him relief. He seemed to be in pain and kept crying. It could have been an insect bite or perhaps somehow he had sprained his hand. Finally we took him to see a pediatrician in Children’s Hospital.

“Do you have other children?” the doctor asked me. “Where is the father?”

Puzzled with the intensity of his questioning, I looked him directly in the eye and told him my son had a sister and, “their father will be in. He’s parking the car.”

Darin’s blood test results showed he had sickle-cell anemia disease, an inherited condition. In no way did I look anemic, so my thought was they were thinking the father must be anemic. When John Stith walked into the department, mouths fell open as they regarded a guy more than six feet tall who clearly weighed more than two hundred pounds and didn’t appear at all anemic. Our blood tests showed we each had sickle-cell trait, the precursor for our offspring to have sickle-cell disease. And my thinking had been wrong. A person with the disease or the trait may never appear anemic.

Only when our children were diagnosed did we learn men and women with sickle-cell trait should be cautioned about having children with each other. The risk factor is that 25% of their offspring will have the disease. Was Darin our only child with the disease? We were instructed to bring Farah in for testing. I balked. After all, she had recently passed her second birthday and had not shown one symptom. I was absolutely skeptical when they told us tests confirmed she was afflicted. Not until some two months later when she had a painful sickle-cell crisis did I accept the diagnosis.

From the beginning, bravely and intelligently their father and I coped with the news of an illness no one in the family or our circle of friends had known about. Candidly, I had difficulty keeping my ears from hearing some type of syphilis when the doctor was saying sickle cell. “Perhaps they had only jumped to our baby having ‘syphilis’ because we were black!” But I was wrong. “Sickle cell” was the diagnosis.

”There is no cure,” the doctors at Barnes Hospital told us and, as I remember, followed up with the information that “Research finds the disease is more prevalent in blacks and East Mediterranean people.” “Well, no wonder there is no cure,” I scornfully contemplated, “it’s a disease to people of color.”

The doctors told us Farah and Darin, throughout their lifetime, would suffer, without warning, extreme pain and organ impairment due to their imperfect red blood cells. They would be in a sickle-cell crisis. Those sickle-cell attacks would lead to their hospitalization for oxygen and intravenous pain medication and blood transfusions to replace lost hemoglobin, such loss the cause of tissue and organ damage.

When they weren’t in crisis, they might be tired and listless. Yet there would be good times when they had a long stretch of time, weeks, even months when they would feel and be so fit, we would think they didn’t have the condition. Unfortunately, this debilitating disease also promised the dire possibility of a life expectancy of only forty years.

Still their father and I dredged up optimism. Researching, we discovered scientists were working for a cure. Until one was found, we knew our children must have everything they needed.

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