Surviving sickle cell

May 19, 2016 in Health, News

Parents explain pain, hope of children living with disease

By Stephanie R. Jones

Contributing Writer

Keishawna and Sheldon Smith are shown with their children Trinitee, 9, and DeShawn, 6, who both have sickle cell anemia. photos by Stephanie R. Jones

Keishawna and Sheldon Smith are shown with their children Trinitee, 9, and DeShawn, 6, who both have sickle cell anemia. photos by Stephanie R. Jones

Many parents of children who have sickle cell anemia have watched as their children suffered unrelenting episodes of pain in their bodies, constant hospitalizations and routine blood transfusions.

The Mississippi Sickle Cell Foundation Parent and Patient Support Group held its annual Parents’ Luncheon at the Jackson Medical Mall May 14, to bring together caregivers of sickle cell patients who told stories of their struggles with understanding the disease and caring for their children.

The National Heart, Lung and Blood Institute reports that 40 years ago nearly 15 percent of children with sickle cell disease died before age 2, while many others died in their teenage years. New treatments have led to increased life expectancy.

For many, the lack of understanding the disease, which mainly affects African Americans, and dealing with doctors in Mississippi who have not had experience or an understanding of the blood abnormality, has added to the challenge.

Nancy Julius of Pickens said she took her daughter to local doctors who were perplexed for years about her condition. Finally, when her daughter was 10 years old, doctors sent her to Jackson where she was finally diagnosed with sickle cell.

“When she was born, we didn’t know anything about sickle cell. She was diagnosed at 10 at UMC,” said Julius. “Basically, doctors said they didn’t know what was wrong. She had had crises for years. Doctors thought it was arthritis, the flu, they just didn’t know. Finally, they sent her to Jackson.” Then Julius said she was told there was a chance her daughter wouldn’t live long, perhaps not until age 30. Her daughter, Jeanne Tate, is now 44 years old.

Latasha Stamps’ 6-year-old son, Christopher, was born with sickle cell anemia. She and her husband, Chris Stamps, both have the sickle cell trait, which means they carry a 25 percent chance of having a child with the disease.

“I am a parent trying to help another parent of another child,” Stamps said. She said they had to decide on the risk of having another child who might also have sickle cell.

The Stamps took that chance and their case has had a better ending than many. The couple had a second child, Cameron, now 3, knowing he might also have the disease. But fortunately he didn’t and was able to provide a bone marrow transplant to his older brother, who his mother says is now cured of sickle cell.

Sickle cell is a disease of the blood, in which the red bloods cells can take on a crescent or sickle shape and become rigid. Red bloods cells carry oxygen throughout the body, and when they become rigid, they can’t properly flow throughout the body. This process leads to painful crises in patients.

Those with the condition require routine blood transfusions to supplant the damaged blood cells. Patients are susceptible to strokes at early ages as well as pneumonia and gallbladder issues.

Chris Stamps said it was hard to learn his son had sickle cell. “I was tough,” Stamps said. “But the unknown didn’t kill the excitement of having a child, although it did set me back.

“I began researching all I could. I spoke with doctors and social workers, everything. I took him to appointments,” Chris Stamps said. “I would say it’s OK. Whatever I was feeling, I knew I had to put my best foot forward for my son.”

A relatively new drug called hydroxyurea, originally developed to treat cancer patients but was unsuccessful, proved to increase hemoglobin in the blood so doctors tried it in sickle cell patients. Several parents say the drug has made a difference.

Keishawna Smith said her son hasn’t had a pain episode in three years since using the medication. “The journey has been easier since we talked to the hematologist as Blair S. Baston Children’s Hospital,” Smith said. She added that the resilience of children is amazing. “After his crisis of pain in his legs and feet, it is like nothing happened,” Smith said.

“We look normal but patients with sickle cell and their parents become advocates,” she said. Her daughter hasn’t had a pain episode in three years.

Other parents also touted the benefits of the drug saying it has lessened pain crises and the need for transfusions and hospitalizations.

They work closely with doctors and social workers and the Mississippi Sickle Cell Foundation, which provide support services to families.

Julius encourages parents to educate themselves about the disease and treatments available.

“I didn’t have that 44 years ago,” Julius said.

Her daughter said she didn’t let the dire prognosis affect her life. “I wanted to go to college,” said Tate, now chairman of the Patient and Parent Support Group of MSCF, which she did.

“I wanted to have a normal life,” said Tate, who graduated from Tougaloo College. The drug hydroxyurea changed her life, she said, relieving her of pain in her legs, chest and back.

Stephanie R. Jones can be reached at srjones13@gmail.com or (601) 454-0372.

Nancy Julius (left) is shown with her daughter Jeanne Tate, 44, who has sickle cell anemia. photo by Stephanie R. Jones

Nancy Julius (left) is shown with her daughter Jeanne Tate, 44, who has sickle cell anemia. photo by Stephanie R. Jones

Latasha and Chris Stamps are shown with their sons Cameron, 3, and Christopher, 6. Christopher received a bone marrow transplant from his brother, which cured him of sickle cell anemia

Latasha and Chris Stamps are shown with their sons Cameron, 3, and Christopher, 6. Christopher received a bone marrow transplant from his brother, which cured him of sickle cell anemia