Doreen, 20, sits quietly with 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.
Dr Badoe, a paediatric neurologist at the Hospital’s Child Health Department, asked: “How are you, Doreen?” Dr Badoe asked, sitting at his desk across from the teenager.
“I’m doing well.” 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. When alcohol is consumed by the foetus mother, it is broken down in her blood and absorbed into the womb through the umbilical cord.
The effects of FASD could be physical, intellective, and behavioral – most affected children display combinations of all three.
Victims often struggle with coordination, emotional control, school work, socialisation, and holding a job, according to the US 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 ASD, more commonly known by its more visible presentation, Fetal Alcohol Syndrome.
From 2008 to 2013, he documented the first 10 cases in Ghana, a country where alcohol is cheap, abundant, and readily available, but knowledge on FASD is not.
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 per cent 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, has masked the true culprit for decades in the nation’s medical field.
Dr Badoe’s research showed that “out of the 10 children documented, 90 per cent presented with failure to thrive and 80 per cent with heart disease.” Hernias were also reported.
These grave medical conditions could 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. 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.
Though the impact on physical impairment is variable, some symptoms are easy to spot because only alcohol could 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 Organisation 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 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.
Dodoo said Doreen 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.
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 Centre for Disease Control (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.
Fact is alcoholic beverages play important roles at funerals, weddings, birthday parties, naming ceremonies, holidays, social get-togethers in Ghana and at these functions, women run the services and are directly or indirectly in charge of the drinks. Better still, have easy access to the drinks. 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 are said to use alcohol to keep warm during colder months. Others drink for ‘darker’ reasons, turning to alcohol as 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 several reasons, including family and work issues, and frustration. “They want to forget their sorrows. They don’t realise 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 a baby. 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 pregnant.
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.
Many people with FASD may suffer from learning and remembering, understanding and following directions, shifting attention, controlling emotions and impulsivity, communicating and socialising 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.
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.
CURE
“There’s no cure, so we manage.” Dr Badoe says and calls for an increase in training and support for parents and doctors.
“We need to educate people. There’s a lot of ignorance.” 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.
“Women need to ask questions.” The doctor calls the current situation in Ghana “tragic.” FASD is “Not a recognised problem. Mothers think they’re doing the right thing by taking medicines,” she said.
“It’s 100 per cent preventable…You must know what are in your herbal medications.”
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 could assimilate peacefully into the society with the right support.
“Loving parents and astute teachers can do a lot,” she noted.
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