MILWAUKEE – Each morning, Bernadette Small would gently lean over the bed to awaken her son for day care.

And each morning he would look up at his mother and greet her with a smile. But one day, her 4-year-old didn’t move when Small called his name. She knew something was wrong.

“The Lord spoke to me and told me to lift his arm,” said Small, of Milwaukee. “I did and it just flopped back down.”

Trevon Small had suffered a Tstroke, a major complication of sickle cell disease, while he slept. He started to drool as she called the paramedics.

At the hospital, doctors transfused blood through Trevon’s tiny body for four hours as his mother stood near the bed watching and praying that he would be OK.

He survived and is doing well in fourth grade, though he sometimes speaks slowly and has changed from being right-handed to left-handed, his mom said.

And like many sickle cell disease patients, Trevon must now have blood transfusions every four weeks to prevent another stroke. But because the genetic composition of African-American blood is unique, it’s best that he and other African-Americans with diseases such as sickle cell, cancer, leukemia and kidney disease receive blood donated by African-Americans.

This poses a problem, considering that African-Americans comprise just 3 percent of the total donor population for the Blood Center, which covers southeastern Wisconsin, said Jerry Gottschall, vice president of medical services.

Sickle cell disease is an inherited blood disorder that occurs primarily in African-Americans. It is estimated that more than 2.5 million Americans have the sickle cell genetic trait and more than 70,000 people have the disease.

In sickle cell disease, the normally soft and round red blood cells that carry oxygen through the body become hard and pointed, making it difficult for them to travel through smaller vessels.

As a result, sickle cells block the flow of blood and can cause anemia, lung damage and pain in the arms, legs, chest and abdomen. It also damages many organs.

In addition, 8 percent to 10 percent of children with sickle cell disease will likely have a stroke before age 10, said John P. Scott, director of the Sickle Cell Comprehensive Program at Children’s Hospital of Wisconsin.

For these children and others whose doppler flow readings find them at high risk for a stroke, blood transfusion therapy is a necessity, he said.

Although blood transfusions are effective, over the long term they cause dangerous accumulations of iron that can lead to heart problems, liver damage or problems with the pancreas, Scott said.

A study aimed at determining if some children with sickle cell anemia, a common form of sickle cell disease, could be weaned off blood transfusion therapy was halted in December because two young patients who stopped getting the procedure had strokes and others developed a higher risk of stroke.

The National Institutes of Health issued a clinical alert recommending that doctors continue using blood transfusions to reduce the risk of stroke among young sickle cell patients, despite the treatment’s risk.

“Before this study, we weren’t very clear on the best way to approach this,” Scott said. “But now there’s compelling evidence to scan every child (for their risk of stroke), put them on transfusion therapy, if needed, and then let them stay on it indefinitely.”

Scott, also a professor of pediatrics at the Medical College of Wisconsin, said that he sees about 400 children with sickle cell disease and an additional 100 adults.

Of the children he treats, 35 require regular transfusion therapy, he said.

Trevon, now 9, and his sister, Takila Wiley, 13, are among those who visit the hospital each month. Takila had two silent strokes and began getting regular transfusions when she was 10.

To keep their iron levels intact, they also receive a chelation treatment overnight, five times a week.

“I’m used to it,” their mother said. “I just tell them “today is the day,”‘ she said. “I’ve learned to leave everything in God’s hands. That’s why I don’t panic – there’s really nothing I can do.”

Milika Miller, 27, of Milwaukee never thought she’d be a regular blood donor – she’s terrified of needles.

“I was certain that I would never, ever donate blood unless I was forced,” she said.

And that’s just what happened, during her sorority-sponsored blood drive in 2002, peer pressure forced her to roll up her sleeve for the first time.

She discovered that the needles weren’t that big and the entire process was quick.

And because she has O blood, her donations could help anyone.

Her last donation was in late December and she says she will be back in six to eight weeks to donate again.

“Blood is a resource that you naturally have,” she said. “You don’t have to do anything else other than come.”

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The Blood Center estimates it has 90,000 blood donors who help ensure the distribution of more than 220,000 units of blood and blood components annually.

Each month about 200 children receive blood transfusions in southeastern Wisconsin. That means the center needs about 490 units of blood to provide care for all children, of which, almost 100 units is just for sickle cell patients.

However, the center says it needs to collect an additional 143 units a month to keep the supply stable.

A pint of blood – one unit – is collected from each donor.

The Blood Center matches all patients who receive transfusions by blood type and whether a certain blood protein is present, referred to as the Rh factor.

There are four blood types – A, B, AB and O. People with type O blood are known as “universal donors,” and those with type AB blood are known as “universal recipients.” In an emergency, anyone can receive type O red blood cells, and type AB individuals can receive red blood cells of any type. In addition, AB plasma donors can give to all blood types.

But sickle cell patients require donors to match an additional five genetic markers, said Gottschall, also co-medical director for transfusion services at DynaCare Laboratory at Froedtert Memorial Lutheran Hospital and transfusion service at Children’s Hospital.

The requirement for extra matches started nine years ago to reduce the chance that the patient would develop antibodies against the donated blood – something that could cause a potentially fatal situation, he said.

However, the lack of donors in the area forces the Blood Center to use mostly O negative blood for sickle cell patients, and the agency has to direct all its African-American donations to those patients as well.

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Gottschall said that though the practice ensures continuous treatment for patients who need transfusions, it’s not considered the best use of the blood because it means using blood that could go to others in need.

“For the sickle cell patients, we’ve been able to find enough blood,” Gottschall said. “We struggle sometimes, but we’ve always been able to provide.”

Shawn Jones, 37, of Milwaukee, is glad that the Blood Center is increasing its efforts to attract more African-American donors.

She has two children – Shatoya, 16, and Darryl Jr., 12, who need monthly blood transfusions.

Darryl had a stroke when he was 8 years old. Doctors are unsure when Shatoya, who is mildly cognitively disabled, had her stroke.

“African-Americans don’t realize how important it is to donate,” Shawn Jones said. “We really weren’t raised to think about it because our parents didn’t tell us or because we don’t know regular donors.”

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(c) 2004, Milwaukee Journal Sentinel.

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PHOTO (from KRT Photo Service, 202-383-6099): sicklecell

AP-NY-12-31-04 0601EST