Doreen, 17 years, sits quietly, tiny beads of sweat quivering near her hairline. It’s hot in the doctor’s office – she has come to Korle Bu Teaching Hospital in Accra to speak with Dr. Ebenezer Badoe, a Pediatric Neurologist at the hospital’s Child Health Department.
“How are you, Doreen?” Dr. Badoe sits at his desk across from the teenager.
“I’m doing good.” She replies, staring off into some unknown space.
Doreen is one of the many victims of Fetal Alcohol Spectrum Disorder (FASD), a condition found in children when exposed to alcohol during time in the womb. FASD is “caused by a woman drinking alcohol during pregnancy”, according to the Center for Disease Control (CDC). When alcohol is consumed by the fetus’ mother, it is broken down in her blood and absorbed into the womb through the umbilical cord. The effects can be physical, intellective, and behavioural – most affected children display combinations of all three. People who suffer from FASD often struggle with coordination, emotional control, school work, socialization, and holding a job, according to the U.S. National Library of Medicine. The disorder is known to be among the leading non-genetic causes of neuro-developmental disability worldwide.
Dr. Badoe is Ghana’s leading researcher on Fetal Alcohol Spectrum Disorder (FASD), more commonly known by its more visible presentation, Fetal Alcohol Syndrome. Between 2008 and 2013, he documented the first ten cases in Ghana, a country where alcohol is cheap, abundant, and readily available, but knowledge on FASD is not.
“Welcome back to Korle Bu Teaching Hospital.” he continues. “We want to demonstrate one or two subtle features of fetal alcohol spectrum disorder.” He asks Doreen to place her hands flat on the desk in front of him.
Although Dr. Badoe’s pioneering medical research is novel here, fetal alcohol syndrome is nothing new. Ghana, like many other nations – such as the United States and Ukraine has struggled with this 100% preventable syndrome for years without knowing of its existence. A lack of training and recognition, along with symptoms of FASD like heart disease and mental disability, have masked the true culprit for decades in the nation’s medical field. Dr. Badoe’s research showed that “out of the ten (10) children documented, 90% presented with failure to thrive and 80% with heart disease.” Hernias were also reported. These grave medical conditions can easily deter doctors and lead to an overlooked diagnosis (which has been the sad reality in Ghana for years). “Apart from South Africa, there are no publications [on FASD] in Africa.” Explains Dr. Badoe. “We need to create public awareness.”
“We can see that her last finger curves slightly [inwards]. Her fingernails are not well developed.” Dr. Badoe points to Doreen’s hands with a pen. Her nail beds are small and uneven, as if she had been biting them. Dr. Badoe is identifying only some of the numerous physical indicators of FASD. And although the impact on physical impairment is variable, some symptoms are easy to spot, says Dr. Badoe, because only alcohol can create these features. Dysmorphia of the face, including a small head, high forehead, squashed nose, and eye deformations, is a tell-tale sign, according to Dr. Julietta Tuakli, the Chief Medical Officer at CHILDAccra. Dr. Badoe explains that often, the child’s philtrum is missing. “There is no groove above the upper lip. It’s completely smooth.” He says, pointing to a photo of one of his infant patients. “Often the upper lip is much thinner than the lower one.” He focuses his attention on Doreen. “She has mild hypoplasia, an undeveloped middle face. Excessive hairiness on her arms, back and other places are also common signs.”
Regina Amanobea Dodoo waits outside the doctor’s office. A veteran actress, Queen Mother, and nurse, Dodoo is the founder of the Ghana Organization of Fetal Alcohol Syndrome, and has been working on the subject of FASD in the United States and Ghana for over two decades. She also happens to be Doreen’s aunt.
Dodoo remarked that there was a potential problem with Doreen when her sister-in-law sent photos of the newborn to her while the nurse was still living in the United States. “I saw lots of drooling [from Doreen].” She says. “I thought it was due to teething.” But when Dodoo moved back to Ghana shortly after, her niece’s drooling hadn’t stopped. There were also other issues. “[Doreen] was unable to hold onto things. [She had] misshapen feet.” Dodoo explained that it was impossible for Doreen to wear flip flops because she was unable to grasp the shoe thongs with her toes. The child was not shy, but very sensitive, and making friends was hard. She was unable to cope in an academic environment. After speaking with Doreen’s mother, Theresa, Dodoo sent the child to Dr. Badoe for a clinical diagnosis.
FASD can only occur if a woman consumes alcohol while pregnant, says Dr. Badoe. That being said, women are encouraged to not drink when pregnant or when trying to conceive, and many experts discourage the consumption of alcohol until after the child had been weaned from breastfeeding. “There is no known safe amount of alcohol during pregnancy or when trying to get pregnant. There is also no safe time to drink during pregnancy” states the CDC. In Ghana, more and more cases are coming forward. Dr. Badoe believes that the situation is highly severe in the country due to cultural norms and practices involving alcohol. Amanobea Dodoo agrees.
“Fetal alcohol syndrome is very common in Ghana. I’ve seen many women drinking a lot, especially young women. She says. During funerals, weddings, birthday parties, naming ceremonies, holidays, social get-togethers, and religious and traditional practices, alcohol seems to always be present. Beer, pito, and akpeteshie are common favorites. The drinking rates differ from one region to another. In the mountains and along the coastal belts in Ghana, many people use alcohol to keep warm during colder months. Others drink for ‘darker’ reasons, turning to alcohol for a temporary problem solver. According to Amanobea Dodoo, “[In Ghana], we don’t really see women as drinkers. This was some years back. Now women drink more than they used to.” She lists off several reasons, including family and work issues, and frustration. “They want to forget their sorrows. They don’t realize that the problem is still there once the buzz leaves.”
A dependency on alcohol that starts early on creates unhealthy habits and may lead to alcoholism. Amanobea Dodoo mentions the advertisements for alcohol that are scattered along highways or on the television channels. “[There are] mostly young people in ads”, she says, alluding to the rise of young women drinking. “The young women should take care. When pregnant, you don’t know until signs start showing, like a missed menstrual cycle.”
The consumption of alcohol by women who are unknowingly pregnant is not only a Ghanaian issue. All over the world, pregnant women drink, unintentionally putting their children at risk during the first trimester of pregnancy. However, in Ghana, women who are conscious that they are pregnant are still downing alcoholic drinks. This phenomenon is largely due to a lack of awareness: People simply are uninformed of the effects of alcohol on their unborn children. They drink to calm a baby kicking in the womb, or right before delivery to ease birthing pains. Some reasons are more spiritual. Women visit traditional healers, who prescribe herbs diluted in alcohol for various reasons. “[There are] many traditional concoctions.” Says Dr. Badoe, who states that often, when women are asked if they consume alcohol, they reply “Oh, I don’t drink, but a [herbalist] gave me herbs laced with alcohol to protect my baby.”
For Theresa Dodoo, Doreen’s mother, it was a combination of factors. “When I got pregnant, I went to see a doctor. He told me I wasn’t [carrying].” Theresa was troubled by the doctor’s diagnosis, as she had been convinced that she was expecting. Perturbed and uneasy, she called a friend, who took her out drinking to help calm her nerves.
Theresa’s edginess never disappeared, so she continued to drink recreationally to quiet her worries. After some time, her church pastor told her she was pregnant. This time, Theresa decided to tell her mother, who suggested that she should go see a herbalist to confirm she was with child. The herbalist prescribed a concoction that he said would help determine her pregnancy, instructing her to mix the herbal powder in brandy.
Theresa would take a shot of the herbal mixture every morning for the next six months without seeking professional medical advice. She described feeling weak and unable to perform daily tasks every time she took it. And while she said she never received confirmation of her pregnancy during her time taking the medicine, she did report feeling kicking in her stomach every time she drank it. At the end of six months, Theresa returned to the hospital, where she would be officially diagnosed as pregnant. Only then did she stop taking the herbs, switching to prenatal treatment and medicine prescribed by the hospital instead.
The first three months of pregnancy are crucial (although FASD can affect the fetus at any stage, says Dr. Badoe). All major organs begin to develop during this phase, including the heart and brain. Alcohol consumed during this stage of pregnancy can have devastating effects. Of the ten cases Dr. Badoe has documented, half had heart problems or heart disease. The brains of some children, which are supposed to have folds and deep wrinkles, are completely smooth, or “broken up as if someone had taken a knife to them,” says Dr. Tuakli. Sometimes, the physical and mental effects can be seen immediately. “Some [children] scream when they come into the world. A shrill, piercing cry. It’s almost an unnatural pitch.” Adds the pediatrician. “They are hyper stimulated by the alcohol…touching only makes it worse. These babies don’t settle.”
Some babies however, like Doreen, are born seemingly unscathed, displaying symptoms later on. Theresa said that after Doreen’s birth, there were no noticeable signs until the drooling started. Dr. Tuakli explains that the effects of drinking early on in pregnancy are most noticeable during learning development. “Their immune systems are often compromised. They fall sick fairly easily.” Some children suffer from “uncontrollable anger, unable to be settled.” Others are fidgety and distractible. “They can learn, but they learn slowly.” She explains. Many people with FASD may suffer from “learning and remembering, understanding and following directions, shifting attention, controlling emotions and impulsivity, communicating and socializing” and “practicing daily life skills, including feeding, bathing, counting money, telling time, and minding personal safety”, according to the USA’s National Institute on Alcohol Abuse and Alcoholism. Performing daily functions and participating within a community becomes incredibly difficult. Communication is problematic.
“Doreen, how is school?” Dr. Badoe asks. He lets her take her hands off the table.
“Oh, very nice.” She replies, still looking into space. Dr. Badoe frowns, furrowing his brow. Amanobea Dodoo had informed him earlier that Doreen had recently dropped her studies. There is a long pause. Doreen shakes her head. She has realized that she has said the wrong thing.
“Oh, all is not nice.” She replies instead.
“Doreen, are you in school?” Dr. Badoe tries instead.
“No.” She replies, and he prompts her further. “I’m not interested. I’m not focused. I don’t understand.” She says. She is starting to get tired. Her voice gets fainter with each passing question.
Doreen switched schools six times before dropping out completely, facing verbal abuse from peers and beatings at times from impatient teachers who were unaware of her condition. When Dr. Badoe asks her if she had friends, she shakes her head. “They hated me because they said I don’t know anything…I wasn’t happy.” Doreen credits her failure in school to memory loss and an inability to concentrate. Amanobea Dodoo confirms that none of the six schools Doreen attended offered her extra help.
Dr. Kwadwo Marfo Obeng, a resident doctor at Accra Psychiatric Hospital, described some psychological issues regarding FASD. It “increases the risk of developing major neurological and psychiatric disorders such as epilepsy.” He says. “[FASD also] increased risk of depression, anxiety, alcoholic dependency.” Other symptoms include vision problems, long and short term memory loss, ADHD and other behavioral issues, says Dr. Badoe. Some people with FASD struggle with anger and impulse control. Problems with abstract thinking and higher expressive language skills have also been reported.
Often, bigger medical conditions like mental impediments can over shadow FASD. “A number of cases have a missed diagnosis.” Dr. Obeng explains. Many doctors focus on the “bigger diagnosis rather than the actual syndrome.” So even though a FASD might be confirmed in a patient, it may be overshadowed and filed away in another cabinet. “If you ask [a hospital] if they have any records” of FASD, says Dr. Obeng, they answer “like, ‘none.’”
Medical records and awareness are in obvious need of improvement, and efforts are underway in Ghana’s medical field. But when asked about treatment, Dr. Obeng shakes his head. “There’s no cure, so we manage.” He calls for an increase in training and support for parents and doctors. Dr. Badoe, Dr. Tuakli, and Madame Dodoo all echo this stance. “We need to educate people. There’s a lot of ignorance.” Says Dr. Badoe. “Doctors must be aware. We must include education on the dangers of alcohol.” states Dr. Tuakli. Amanobea Dodoo also calls for advocacy, education, and communication. “The sooner you can diagnose,” says Dr. Tuakli, “the better.”
None of the doctors think that banning herbs is the answer. “Many [herbal medications] are good…I’m a firm believer in them.” Says Dr. Tuakli. But “Women need to ask questions.” The doctor calls the current situation in Ghana “tragic.” FASD is “Not a recognized problem. Mothers think they’re doing the right thing by taking medicines.” She says. “It’s 100% preventable…You must know what are in your herbal medications.”
There is no real cure for FASD. Rather than focusing on a diagnosed children’s limits, Dr. Tuakli says that doctors try to focus on what the child is good at. Dr. Badoe recommends occupational therapy to refine motor skills. “If you can see and hear well, you can learn.” He tells Doreen. Dr. Tuakli says that these children are capable of learning, even if it is at a slower pace than most. “It’s a question of practice, teaching them over and over until they get it right.” They can assimilate peacefully into society with the right support. “Loving parents and astute teachers can do a lot,” She says.
Now seventeen, Doreen has since started learning hairdressing at a vocational school. She washes and combs the hair of mannequin dolls at a salon in her neighborhood. “I like it.” She tells Dr. Badoe when he asks her if she likes her new job. “I want to have my own hairdressing store one day.” Doreen is also hopeful to revisit her education in the future. “I want to go back and learn.” She says, but “I always forget what the teacher taught me the following day.” Her memory seems to be heavily affected – she is unable to be alone due to unusual fears and paranoia; she forgets to brush her teeth. But Doreen seems comfortable, and hopeful about the future. She smiles faintly when she needs to during Dr. Badoe’s questions, her hands in her lap, always gazing off somewhere else. “She lives in her own little world.” Amanobea Dodoo remarks.
Doreen will continue to struggle with FASD. She will have difficulty grasping the brushes at work, learning new skills, and will forget instructions. There is no cure for this disorder, and its effects and symptoms will be with her for the rest of her life. But now, with the help of Dr. Badoe, Madame Dodoo, and the support of her family, she’ll be able to live as normal a life as possible. “I’m happy that other families [struggling with FASD] will be able to look at us as an example,” Theresa says.
Doreen has many challenges ahead of her. But now, she also has hope.
Victus K. Sabutey, Research & Productions Coordinator, Creative Storm Networks email@example.com
Maxime Lambert firstname.lastname@example.org , Intern, Creative Storm Networks