- Eric Firman Mbadinga
- BBC Africa, Libreville
Attention ! Sensitive words and images.
Emeriane Pemba has been using the same version for a year now when she talks about the birth of her daughter Emmanuelle; a child born with a form of anencephaly.
The family lives in the Ciciba District in the northern suburbs of Libreville, the capital of Gabon.
The little girl was born with a skin protrusion in the middle of her face, which among other things prevents her from breathing well.
It is a congenital malformation that causes certain parts of the brain and skull to be missing at birth.
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“In the operating room, when they were done, they took out the child, I said show me the child.
They said no, I was still under anesthesia, I heard voices saying, “Oh, that’s a monster,” says Ms. Pemba.
According to the journal Futura Santé, this disease affects one in 5,000 live births.
13-month-old Emmanuelle’s family faces an uphill battle to get much-needed treatment.
She also faces constant stigma that started with the midwives when she was born.
“I took the child’s clothes and gave them to the midwife. Suddenly she came back with the cradle, the laundry and a bag, she said: “Get your things. He’s not a kid, he’s a monster, take the kid, but we don’t want you to keep that kid,'” confirms Eulalie Ngouma, the baby’s grandmother, in more detail.
Emeriane and her family are formal, the medical staff’s comments moments after her delivery are always difficult to get through.
And for this family, the stigma and rejection they faced when Emmanuelle was born continues to play an important role in their lives, especially through the looks and whispers around them.
According to the baby’s mother and grandmother, it happens that people on the street stare at her or stare at her persistently, while others express their surprise with onomatopoeia.
The brain is part of the nervous system housed in the skull. It controls functions such as heart rate and motor functions with the spinal cord.
Anencephaly is a malformation that is present at birth. It occurs when the skull, scalp, and brain do not develop properly in the womb.
Parts of the baby’s brain and skull are missing. The brain tissue that forms is usually exposed because there isn’t enough skin and bone to cover it.
Most babies born with this condition survive only a few days, weeks, or months after birth, with a 100% mortality rate in the first year.
Little Emmanuelle has so far thwarted all the statistics, fueling the hopes of her family, who are praying that a surgical solution will be found and brought to the little girl.
There is no known permanent cause or factor other than an unfortunate set of circumstances favored by vitamin B deficiency.
Without being able to give such answers categorically, doctors and other professionals urge everyone to act before, during and after the pregnancy period in order not to know this situation.
dr Florence Kamayonza Baingana, public health expert at the World Health Organization, recommends taking folic acid during pregnancy. It is a water-soluble vitamin rich in B vitamins.
According to Dr. Florence Kamayonza Baingana helps prevent neural tube defects such as anencephaly.
The family remains confident
The distraught family are desperate for baby Emmanuelle to receive treatment abroad, despite medical research and experts saying there is no known treatment or cure.
The baby’s grandmother has since stuck to what is now part of her weekly schedule.
Whenever she can, she knocks on the doors of the country’s health and social services in search of help and support. The answer she gets most often is “that she doesn’t have enough money to take care of the baby”.
“It’s been a long back and forth with no result. Every day I sometimes leave the house at 5 in the morning with no result, it makes me cry, but when I come I can’t show my daughter that it means a lot to me… Because I don’t want to. ‘She’s traumatised,’ explains the 60-year-old, who is holding her little girl in her arms.
For her part, Emeriane has a new routine when funds allow, searching the internet for cases of successful surgical procedures in hopes that her daughter will one day benefit.