Although it was 17 years ago, Derry Ferguson remembers that night like it was yesterday. Her seven-month-old baby, Darrian, had a fever that she couldn't get to break and his unceasing, heartrending cries forced her to take him to the hospital because nothing she did seemed to ease his discomfort.
For the then 26-year-old mother, it was a relief when he was diagnosed with meningitis called pneumococcus and that it could be treated, but her heart sank when doctors also discovered Darrian had sickle cell anemia, a genetic condition passed down in families that affects the blood cells that carry oxygen in the body. The disease is a sneaky condition that can take sufferers on a roller coaster ride of pain -- from feeling healthy one second, to deathly ill in another. With proper precautions, sickle cell anemia may not be life-threatening, but even so it should be handled with care.
"I didn't know much about sickle cell back then when my son was diagnosed, so it didn't quite settle for me at first," says Ferguson, 43. "I mean I heard about it, but I never really knew the facts about it. There wasn't a lot of information about it and the screening for the trait wasn't common yet. It was only after they found out that Darrian had sickle cell that my husband [Cavalle Ferguson] and I were screened and saw that we both had the trait for sickle cell which is why Darrian inherited the illness. The hardest part at the beginning for us was that he not only had a really bad case of meningitis called pneumococcus, but he was unable to fight off the infection due to his sickle cell."
Darrian eventually recovered from meningitis, but his fight did not leave him unscathed. He has brain damage, was paralyzed for a few months and blind for the first two years of his life. With years of treatment and therapy he eventually regained his ability to walk and the sight returned in his right eye.
But he is constantly challenged with sickle cell related issues. He has had two blood transfusions and had to have his gall bladder removed. As a result he has had to remain on a strict, twice-daily antibiotic regimen to improve his immunity. He has also suffered two strokes in a one-year period. The second stroke in June 2011, left him in excruciating pain. He now experiences difficulties on the right side of his body, and is still recovering, but the process is slow.
"Darrian is a fighter and so positive," says his mother. "He may not be happy about his lack of mobility, but he is still trying, although it is painful for him. I am just so happy that he is able to work as well as he has and keep on smiling," says Ferguson. "Right now he fills his days with the things he loves. He isn't able to go to school since his stroke, but he is still happy and that makes me happy."
Pediatric hematologist and oncologist, Dr. Corrine Sinquee, says the sickle cell condition results in abnormal blood cells that are sickle in shape, and that its these abnormal cells that cause complications throughout a patient's life. She says the sickled cells are destroyed more rapidly than the usual cells due to their shape, and can also cause obstructions in small blood vessels which can affect the efficiency of oxygen being circulated throughout the body. She said that the abnormal blood cells cause the pain and swelling that is seen as a complication of the illness.
The most common form of sickle cell occurs due to both parents having a sickle cell trait in their genetics. As a result, any child born between them has a 25 percent chance of developing the full-blown condition. The doctor who practices out of the Bahamas Heart Center on Collins Avenue says there are no definite statistics on the frequency of the illness for the local population, but comparing The Bahamas to other parts of the Caribbean with similar demographics, she calculates that 10 percent of the black population has the sickle trait, but only one in 300 persons are likely to develop the full sickle cell disease. With 5,000 lives births on average per year in the country, she says there are only about 16 new cases of the condition likely to be presented annually.
The medical practitioner says sickle cell is an illness that parents can manage fairly easily, but that it is an illness that needs to be taken seriously from the start. Treatment of the disease is symptomatic and there is no real cure for it -- save a bone marrow transfusion.
"Early detection of the disease is key to successfully treating it," said Dr. Sinquee. "Parents with children with sickle cell should always be on their toes and know what is happening with their child. You don't have time to guess or assume, since a cold or flu can turn almost deadly in no time. Sickle cell children tend to be okay one minute and then not another. So you have to know the signs and what's normal from what's not when it comes to your child."
The doctor says parents should screen themselves prior to having children so they can be aware of the likelihood of having a child with the disease. Even after the birth, she says it is important to get the baby screened and tested as well. The earlier parents know their child has the illness, the better it is for them to take the necessary precautions to keep them healthy and start them on the appropriate medications.
"Since infections are most rampant in a child's first five years of life, it is important to get them off to a strong start and be on top of any minor illness they may acquire. They may also suffer from an acute splenic sequestration crisis which is signaled by pain and an enlargement of the organ. This is something parents have to learn to recognize especially in their child's early years when it is most likely to occur. If left untreated other complications or even death can result."
Other complications throughout the years a "sickler" can expect include strokes, anemia, painful crisis, jaundice and a higher susceptibility to infections.
"Throughout the years there have been advancements in medications like hydroxyurea that allow patients to live less painful and better quality lives. In the past, the statistics of life expectancy in persons with the illness were grim but now the average patient has the potential to live well into their 60s or even 70s," says Dr. Sinquee. "What is done now more than in the past is screening parents and children early as well as counseling parents on how to deal with their children should they have the disease. It is possible to live a normal life as long as you keep consistent with your child's medication and treatments. This is not a death sentence. It's just about management and knowing when it's time to get help when things get beyond your control."
Ferguson's advice to other parents who may have children with sickle cell is to always remain positive. She says even when things don't look good, parents should remain upbeat. She used to fear that her son wouldn't make it to adulthood due to the statistics available in the earlier stages of dealing with his illness but she is certain now more than ever that with care and love, "Sicklers" can make it to a "ripe old age".

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