Malik Tori Mia
Mia Adams
A Child with the Sickle Cell Disease
Written by her Mother, Tori Adams
Who would know that an 11-year-old Huntsville Middle School student has Sickle Cell Disease? She looks normal; she does the same activities as other kids, but she is different.
Mia Adams was born in Monroe, Louisiana on June 8, 1995. Routine newborn screening was done, and it was revealed she has Sickle Cell Disease, Homozygous SS, the most severe form of Sickle Cell Disease. (Sickle cell disease occurs when a person receives two sickle hemoglobin genes from parents. Sickle cell trait results when a person receives a regular hemoglobin gene from one parent and a sickle hemoglobin gene from the other parent.) At the six weeks’ check up, further testing confirmed the diagnosis. Mia began maintenance treatments with an antibiotic called Pen Vee K and also with Folic Acid. With her family, Mia began visits to a pediatric hematologist every other month for routine check ups. At five months old, she developed an allergic reaction to the Pen vee k and the medication was stopped. Over time, we have learned that she is allergic to numerous antibiotics, micro pore tape, and nickel. Mia can’t let the button on blue jeans come in contact with her skin without a reaction!
In November 1996, Mia had a severe blood infection. She was admitted to the hospital and given intravenous fluids in her arms and in her feet. She was given ‘round the clock medications, placed on oxygen, and monitored continuously. Since that hospitalization, she has battled respiratory syncitial virus, pneumonia, recurrent ear infections. Nothing major happened until March 1999. Mia was admitted into the hospital to prepare for ear, nose, and throat surgery. The x-ray showed congestion in her lungs. Doctors worked vigorously to clear her lungs before surgery. One week later, she was cleared to have surgery that was successful in clearing up her numerous ear infections. Things began to turn around, and her health improved overall. She was more vibrant and playful with her 2-year-old brother, who, thankfully, has no traces of the disease.
In January 2003, Mia was rushed to the emergency room complaining of chest tightness, which was described as pins sticking in her chest. Her vital signs revealed her oxygen level was low, and doctors began to work on the 7- year –old. She was admitted into the hospital for further testing and treatment. An ultrasound of her distended abdomen revealed her spleen had shriveled up and died form loss of blood flow. She was again given intravenous fluids, oxygen, and pain medications. After her release from hospital, her pediatrician monitored her on a monthly basis.
In May 2003, she was back in the emergency room because of chest pain, and difficulty breathing. Her oxygen levels were low and the decision was made to transfer her to a specialty hospital in Shreveport, Louisiana, for treatment by a pediatric hematologist specialist. After 3 days, Mia was discharged from the hospital. In June 2003, I moved my family to Huntsville, AL, for better job opportunities. In August 2003, Mia complained of shortness of breath and a stabbing pain in her chest. I was in such a panic! I grabbed her up, put her and her brother in the car, and started driving in any direction trying to find a hospital. By God’s hand, we were led to Huntsville Hospital. I stopped at Huntsville Hospital Main and then saw the sign down the street that says Huntsville Hospital for Women and Children. The emergency room staff (for women and children) began to treat Mia immediately and she was admitted that night. Mia missed her first full week of school in her new hometown. Fortunately, this hospitalization led to referrals to Dr. Thomas H. Howard (pediatric hematology-oncology) of UAB Children’s Hospital in Birmingham, AL, Dr. Steffane Battle (Pediatrician) UAB-Huntsville, and Dr. Vinit K. Mahesh (Pediatric Pulmonologist). Mia began taking Hydroxyurea, a medication that decreases episodes of vaso-occlusive pain crisis, hospitalizations, and episodes of acute chest syndrome. She was also given Foradil and Pulmicort to help control her asthma. The combination of Hydroxyurea and oxygen therapy (started in July 2005 due to low oxygen levels) has improved Mia’s quality of life. Before this therapy, any activity would make her tired; her stamina has improved considerably.
The repetitive doctor visits and emergency room visits has taken a toll on our family. We have missed weeks of work, which causes a strain on finances. It has also caused sibling rivalry from her now 9-year-old brother, Malik, who also deals with absenteeism from school and from the stress of not knowing what was going to happen next. We live day-to-day, praying that Mia stays in good health.
Mia’s condition is good at this time. The last hospitalization was in February 2005. She attends school daily, is on the honor roll, and in SPACE. She dreams of attending college to become a doctor to help children like her.