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Breaking the Silence of Sickle Cell Disease

By Tracie Isaac

Seleemah Matondo (daughter with SCD). Photo provided.

In October of 2005, Caroline Matondo and her husband welcomed their newborn baby girl into the world at Strong Memorial Hospital in Rochester, NY. Some may immediately consider welcoming a child into the world as wonderful news, however; the Matondo’s story began with not so great news.

During Caroline’s tenth week of pregnancy and prenatal examinations she was informed that test results indicated that her unborn child has sickle cell disease. There were many questions that Matondo and her family needed to be answered, additional information indicated that both parents carried the sickle cell gene trait.

What is sickle cell anemia or sickle cell disease? It is a severe hereditary form of anemia in which a mutated form of hemoglobin distorts the red blood cells into a crescent shape at low oxygen levels. People who have the sickle cell disease inherit two abnormal hemoglobin genes, one from each parent. It is most common among those of African descent.

After receiving the diagnosis of their unborn child, the couple became involved in counseling which provided them with information on what to expect when a child has the inherited blood disorder. Through the American Red Cross, they were provided with support from a Sickle Cell Support Group. The group educated them of the awareness that their child would be vulnerable to recurring bouts of illnesses and pain that would repeatedly prevent her from having regular school attendance and would interrupt their lives as working parents.

It was alarming news, decisions had to be made, but aborting the pregnancy was not the choice they wanted to make.
Fast forward to 2021, Seleemah, now 16 years old, has traveled through a very painful life journey. The first pain crises illness appeared at nine months old when the sickle cell began to show its presence in her body. The child’s medication began with Penicillin taken every day until the age of five years old. At nine-months old, the family began visiting the emergency room department almost every month, once or twice.

What are pain crises? When clusters get large enough, they can result in sudden, unpredictable and intense episodes of pain called pain crises, or other sudden complications that may require medical help. A doctor or health provider may refer to pain crises as “vaso-occlusive crises.”

Baby Seleemah would sometimes have to have extended stays in the hospital and this continued until she was about five years old. At this point, she began a new medication, Hydroxyurea which seemed to reduce her pain crises episodes over the next 10 year period.

From the age of five to 15, Seleemah experienced severe pain crises which prevented her from walking at times or a crippling pain throughout her body that reduced her to be bed ridden. However, over the 10 year period the episodes were less and less frequent.

Headshot of Caroline Matondo. Photo provided.

Caroline said that Seleemah may have built up a tolerance to the medication, because now at the age of 16, a new level of pain has entered Seleemah’s life. She now receives a series of necessary blood transfusions, each within three-months of the last. Blood transfusions help to reduce the pain crises. The American Red Cross assists the family by providing the blood that is needed for Seleemah’s transfusions.

“It is important that the public, especially anyone of African descent, obtain more information and education about sickle cell disease,” stated Caroline.

Caroline, a Tech Support for a cable network here in America, is from Congo, Africa. Her feeling is that in Africa and America alike, many people do not understand sickle cell disease. Misinformation such as “it is a curse” or considering the disease a taboo subject, prevent many from obtaining the correct information. “The silence needs to be broken and support is needed for families,” she said.

Life with this debilitating disease brings additional down spirals. A recent diagnosis revealed that now Seleemah’s spleen is failing. Surgery is scheduled to remove her spleen. Through the assistance of the American Red Cross, the greater Rochester Chapter, the Matondo’s have access to information, resources and blood transfusions.

No matter the challenge, the Matondo’s keep fighting!