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losing a son to sickle cell disease: he died 'gasping for breath' at six years old
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gabriel omowayeola, centre, pictured with his 17-year-old son, left (name not shared). the omowayeola family tragically lost another son, oluwatosin, right, to sickle cell disease at the age of six.
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gabriel omowayeola remembers his young son dying—and there was nothing he could do. “he was shivering. he was gasping for breath,” he says, recalling that tragic day almost 20 years ago. his son oluwatosin was only six years old. he died of sickle cell disease, an inherited blood disorder that slows blood flow and prevents oxygen delivery to parts of the body.
he wants to honour his son by sharing his story.
sickle cell disease is devastating. it causes sudden episodes of excruciating pain and can lead to lung problems, infections, and kidney disease, clawing away at life. gabriel was living in lagos, the largest city in nigeria, when his baby son showed developmental delays. he took him to a hospital, hoping for answers. knowledge and care of the disease at that time were limited, but it was the beginning of a journey for oluwatosin of numerous blood transfusions to help relieve symptoms and decrease the percentage of sickled red blood cells. these cells are misshaped like a crescent or sickle-shape because of the gene mutation and don’t bend or move easily, blocking blood flow.
seeing your child in terrible pain from sickle cell disease
seeing his son in pain with deteriorating health, he took him away from the city to the village where gabriel’s mother lived so that she could help with his care. he was also told to be careful to avoid mosquitos that can lead to serious infection in his vulnerable child.
“she really tried her best,” gabriel says of his mother’s generous help and kindness. his memories of his son now reflect the grief that stays with any parent who can’t change the outcome.
“he looked so pale and you could see everything written all over him. it was not about malnutrition, but his stomach was distended. he looked like someone suffering from yellow fever.”
gabriel carried on with his own life, having another son who’s now 17, and moving to canada in 2023 to study at the memorial university of newfoundland in st. john’s, newfoundland and labrador. he recently completed a master’s degree in political science and works as a home support worker with seniors in the community.
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“i’m naturally compassionate, so that is the reason why home support work is really aligned with my way of life, and that is the reason why i volunteer.” he wants to give back and help where he can, and joined the canadian cancer society to volunteer for advocacy, bringing his voice to awareness and education of sickle cell disease.
awareness and steps to prevention can save lives
sickle cell disease is the most common inherited condition in canada. over 6,000 people are living with sickle cell disease, and that number is continuing to grow, says canadian blood services. an estimated eight million people worldwide live with sickle cell disease, and in the u.s., nine of 10 people who have sickle cell disease are of african ancestry or identify as black.
there are medications to help manage symptoms and lower the risk of complications. as well, transformative therapies like a blood and bone marrow transplant or gene therapy may be options. what’s most common in treatment is frequent blood transfusions and many people, including children, depend on donated blood and blood components, so there’s a need for blood donors from a similar ethnic background or ancestry for the best outcomes.
how is sickle cell disease passed to a child? more information on the disease is available in the u.s., where about one in 12 african americans has a single copy of the mutation, which is a condition known as the sickle cell trait (where typically there are no symptoms). further, one in 500 african americans has two mutations, causing full-blown sickle cell disease. if two people with sickle cell trait have a baby, one in four of those pregnancies will result in a baby with debilitating sickle cell disease and two in four will result in a baby with sickle cell trait.
sickle cell trait is diagnosed with a blood test
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this is where seeing a doctor for testing and much-needed caution come in. when you know you have the sickle cell trait, make sure your partner knows if they also have the sickle cell trait or a different abnormal red blood cell trait to understand your risk of having a child with sickle cell disease. as the u.s. centers for disease control and prevention notes, sickle cell trait can be diagnosed with a simple blood test.
gabriel says there’s a lot of misinformation around sickle cell trait and the danger of sickle cell disease passed to newborns in his homeland. “this misinformation has led to a lot of problems and a lot of deaths,” he explains of high rates of child mortality that continue today.
he’s been through the worst and wants to see prevention in action. adults should have a blood test to know their blood type and to know if they are a carrier of the sickle cell trait. most important, they need to discuss their status with potential partners so that both adults are aware of the risks in family planning. this could save lives.
“i want everybody to be aware of child mortality. it’s something that we need to know more about it.”
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