Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
Monroe Carell Jr. Children's Hospital at Vanderbilt
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Monroe Carell Jr.
Children's Hospital
at Vanderbilt
2200 Children's Way
Nashville, TN 37232


(615) 936-1000

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Meet Zakia
 

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Zakia Onyekwere loves to scavenge for insects and flowers outside, and when inside, she dresses up like a princess.

When talking about her visits to the zoo, the 3-year-old toddler exclaims, "I want a monkey to tickle my belly."

But her outgoing, chatty nature hides a sometimes painful disease that can turn her world upside down. She has never let that stop her, and even won her first beauty pageant in Cool Springs on Feb. 4.

Zakia has sickle cell anemia, an inherited blood disorder that affects the red blood cells. Sickle cell most commonly affects the African-American population, occurring in about 1 in every 400 African-American births. There are about 70,000 to 100,000 people with sickle cell in the United States.

Doctors discovered Zakia had sickle cell when she was 2 weeks old during a routine newborn blood screening. Her mother, Zanira Dudley, was a carrier of the sickle cell trait, which is found in one in 12 African-Americans.

Normal red blood cells are doughnut-shaped and pass easily through blood vessels. Sickle cells are hard, sticky and shaped like a crescent moon. When the sickle cells travel through small blood vessels, they can get stuck and clog the blood flow. This causes pain episodes, called a sickle cell pain crisis, often in the arms, legs, chest, back or abdomen. Continuous sickle cell issues can lead to blood vessel damage and injuries to organs in the body.

In her first several months of life, Zakia was in and out of Monroe Carell Jr. Children's Hospital at Vanderbilt because of her crisis episodes. Her mother, Dudley, didn't know when a "crisis" was happening until it was out of control.

"She was too young to tell me she was hurting," said Dudley. "Now she's older, and she can tell me, ‘Mommy, I'm hurting.'"

Zakia has pain about twice a week, but it can be controlled with antihistamines. She hurts more when the weather is colder.

Her physician at Children's Hospital is Elizabeth Yang, M.D., Ph.D., associate professor of pediatrics. Before Zakia turned 1, Yang prescribed a medication for sickle cell called hydroxurea. The pain episodes decreased, and she had fewer emergency department visits.

"Dr. Yang's wonderful, the hospital team is so wonderful and I am blessed to have them," Dudley said. "A lot of people don't have knowledge on sickle cell in other states."

Dudley said she has an adult cousin in Alabama with sickle cell, but the cousin didn't understand much about the disease until Dudley explained it.

"Zakia will tell everyone, ‘I have sickle cell,' and she knows all the medications she takes," Dudley said.

But when Zakia's not telling her community about her sickle cell, she's just a child, picking on her 20-year-old brother, spelling her name and playing outside.

"She doesn't let sickle cell stop her," Dudley said.

 


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