MOTHER TELLS OF LIFE WITH SICKLE SELL

Had it not been for a lot of faith and a little idle reading, sickle cell anemia might have destroyed Helen Arrington's life.

Arrington first became aware of the disease when her family had a chicken pox outbreak 22 years ago. Her middle son Mikkell, then 4, was the only one of her three children who didn't seem to get better. He continued to run a temperature that wouldn't break. His skin took on a strange color even after all of the other children started getting better.

Arrington, a New Madrid County native, finally decided Mikkell needed medical attention. She took him to see a doctor in Dexter. He was diagnosed with anemia and was given a large bottle of iron to take.

Mikkell got sicker and more jaundiced, so they returned to the doctor, who prescribed "an even bigger, darker green bottle" of iron to beat the anemia, she said.

Mikkell appeared to get even sicker and more jaundiced. Arrington thought the medicine was the cause. She went against the doctor's orders and halved and watered down the dosage.

She probably saved his life in the bargain.

They returned to the doctor's office a third time, and it was there while flipping through a magazine that she read an article about sickle cell anemia. She found a doctor who would listen to her concerns and had her son tested. He was diagnosed with the disease and immediately admitted to a hospital.

"I found out later the iron the doctor gave me could have killed my son if I had given it to him the way he told me to," she said. "Nobody knew what it was back then. Everybody thought it was simple anemia and not a real problem."

Sickle cell anemia affects one in 1,000 Missourians. Eight to 10 percent of African Americans are affected, but the disease is not limited to that ethnic origin. It is a worldwide disease affecting people of Saudi Arabian, Indian, Balkan or Mediterranean descent.

Arrington said she had never heard of sickle cell anemia when she was growing up. It wasn't mentioned when she and her former husband Gene married, nor was she tested for it when they started their family 29 years ago.

Even so, she is a carrier of the sickle cell trait, as is Gene. Because both parents carried the recessive trait, all three of their sons were expected to have either the trait or the disease.

Mikkell, now 26, is the only one of the Arrington sons to have sickle cell anemia. Carl, 28, is a carrier of the disease, while youngest son Gabriel, 25, has shown no signs of carrying the trait or disease.

None of Arrington's other family members has been diagnosed with the disease, although a couple of her siblings do carry the trait.

Sickle cell anemia is caused when a gene makes abnormal hemoglobin and typically round cells appear to be pinched into a sickle shape. Although not itself a fatal disease, most people with the disease do not have normal life spans.

Because the mutated cells aren't able to pass through the body normally and generally break down faster than normal cells, people with sickle cell anemia experience life-threatening crises that cause extreme pain and dehydration. Their lowered immune systems make them more susceptible to other infections.

The incurable disease can cause anemia, stunted growth, cirrhosis of the liver and osteoporosis, as well as many other health problems.

Arrington's memories of Mikkell's childhood include boxes of antibiotics, thousands of gallons of Gatorade and numerous stayovers in the hospital. It was physically and mentally tough for him, but faith and a good doctor who trusted her instincts helped them through it, she said.

"All I can remember in the first six years was a lot of him running a temperature in the middle of the night and us rushing him to the hospital," she said. "We could always depend on the last week of August and the first week of September being in the hospital."

She said Mikkell nearly died after one particularly bad crisis because an associate doctor didn't trust her to know when he needed to be admitted to the hospital. He thought he understood the disease but really didn't, a fact that almost cost Mikkell his life, she said.

"After that episode, I had a little talk with God, and that little talk included him showing me a rainbow," she said. "I told him I needed a sign and he showed me a rainbow.

"The promise was "You know your son may be ill, but whatever it is sickle cell won't take him.""

Mikkell hasn't had a major sickle cell crisis since that time, a fact Arrington attributes completely to her faith. Although he was small and thin as a child, he was able to play soccer and do many of the things other children did, she said.

While his appearance could still be classified as lean or lanky, a late growth spurt has now pushed Mikkell over 6 feet tall. He still has bad days, but sickle cell no longer controls his life as it did in the early years, she said.

"He still gets tired very easily and has to have a lot of rest, but he pushes himself very hard," she said. "He constantly pushes himself to be normal -- my son's one heck of a young man."

Arrington said she is proud of her family and probably wouldn't have changed anything had she been aware that both she and Gene carried the sickle cell trait. Even so, she said all young women at risk of carrying the trait should be tested. She said it isn't just a "black thing," and anyone can put their child at risk by not knowing their family history.

"The people that go around saying they can't have it don't know what they are talking about. If you don't know your background, yes, you can have it," she said. "Even before you think about having a baby, have the blood test done. Why would you put your child through that torture?"