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Sickle cell disease: Know your status, mournful mom urges

TRUDY TOMLINSON | 5/5/2016, 11:46 a.m.
Burying a family member is never easy, especially when a parent buries a child. This sad chore fell upon now ...
Yvette Teixeira and her children Contributed

Burying a family member is never easy, especially when a parent buries a child. This sad chore fell upon now mother of five, Yvette Teixeira, when her eldest daughter, Makayla, passed in August 2014.

Makayla, 9, who had been born with sickle cell anemia, suddenly became sick and was rushed to St. Luke’s Hospital. She was given pain medication and sent home. The next day, she died in her mother’s arms.

“If the hospital had just done an X-ray on my daughter, she would still be here,” stated Teixeira. “Their lack of knowledge about the disease allowed them to send her home because the medical examiner said she should have never been discharged from the hospital in the condition she was in. Following what the doctors said because they are supposed to know best, we brought her home, and a day later she died in my arms.”

Her family later learned that her spleen had rapidly enlarged, but doctors had not detected its growth.

Sickle cell anemia is a devastating and painful genetic condition that affects both children and adults.

According to www.sicklecelldisease.org, sickle cell disease is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels.

When sickle-shaped cells block small blood vessels, less blood can reach that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This damage is what causes the complications of sickle cell disease. There is currently no universal cure.

CDC.gov reports that SCD affects approximately 100,000 Americans. SCD occurs among 1 out of every 365 Black or African-American births. SCD occurs among approximately 1 out of every 16,300 Hispanic-American births. Approximately 1 in 13 Black or African-American babies is born with sickle cell trait.

“A lot of people locally do not know about sickle cell,” stated Teixeira. “My ex-husband and I were both tested at the Sickle Cell Center in Georgia when my daughter was born, because when she was born, they found out she had sickle cell. They missed that my husband actually had the disease. They did not find out until he almost died at the age of 34. When I was born, they did not test for sickle cell then.

“Behind this I got all my children retested three times. I came to find out that my ex-husband also has the thalassemia beta trait, and that is something that can turn into something like sickle cell if you have two people that have the same trait. My children all have the SCD trait, plus the thalassemia beta trait. When they grow up, they have to go through genetic testing before they have a baby, then make a choice from there about having kids.”

“One of the most important thing for our community is education and screening,” stated nurse practitioner Andrea Adams. “Sickle cell anemia is an inherited trait/disease. The importance of genetic testing prior to family planning should be emphasized in helping to educate individuals about the natural history of the disease. Currently is it mandatory in all 50 states to test all newborns for the trait/disease.”

Teixeira struggles with the death of her daughter each and every day. She is also dealing with her own medical issues, which prevent her from working, plus that of one of her daughters.

“I was in the Social Security office and the lady that was interviewing me, she had just had a baby,” said Teixeira. “I found myself pleading with her to get her daughter tested again just to be on the safe side. Sickle cell is not something that people think about.If you have it and your partner has it and you don’t know it, your baby has a 1 in 4 chance of coming out with the disease. It is just like HIV, know your status. I don’t want anyone to watch their child die. It’s a two-minute test and it is worth it.”

To learn more about sickle cell disease, visit CDC.gov, sicklecelldisease.org or visit your local health center.