Every day, Philomene feared that her daughter would die. In 2008 she had given birth to a beautiful child with a small bump on the back of her head … it was brain matter protruding through an opening in Oceane’s skull and collecting in her ballooning skin. In more developed countries, this condition, known as an encephalocele, is easily identified, often before birth.
But Philomene and Oceane lived in Benin, West Africa, and did not have access to modern medicine. What started out as a small protrusion grew day by day, month by month, into a massive growth that took over both of their lives. Philomene watched in terror as her baby’s condition grew worse and worse. “I stopped bathing her head because I was afraid the tumor would explode,” she says.
Not only was the young mother terrified, she was also deeply ashamed. She overheard the comments of other women, passersby, and neighbors. “Look at the horrible baby she has,” they would say.
In October 2009, Philomene managed to take her infant to the Africa Mercy. Doctors examined Oceane. The growth was so large that the baby was unable even to lift her head. The necessary procedure would normally require multiple specialists, expensive equipment, and a follow-up stay in a Pediatric Intensive Care Unit. It would be high-risk, even with the boundless resources of western medicine. You can understand why the doctors on the Africa Mercy were concerned.
Finally a translator informed Philomene that the surgeon would operate. The young mother soon found herself waving goodbye to Oceane as her daughter was taken into surgery.
And Philomene waited …
Hours later, Oceane was wheeled back to the ward. Her mother could not believe her eyes. For fifteen minutes, Philomene stared, oscillating between contented smiles and joyful tears. Her daughter was lying before her, without the unnatural growth. Oceane would soon be able to lift her head with ease.
And now the calendar has moved forward seven years …
Mercy Ships returns to Benin, and Oceane is one of 40-plus former patients gathered for long-term check-ups with Mercy Ships. Volunteers who have been with charity since 2009 are anxious to hear the former patients’ stories. What difference did surgery make during the past seven years of their lives?
Their answers were overwhelmingly positive. “I guess I shouldn’t be surprised!” says Dr. Gary Parker, Chief Medical Officer. “But still, when you see it after seven years, to see the children growing up, to see them in school, to see them speaking clearly, to see these people who had big tumors without the tumors, it’s great.”
But Oceane’s case was complex, and seven years is a long time. Before the mother and daughter arrive, murmurs go around the evaluation tent. What will this check-up reveal about the young girl’s progress, her future?
Mid-morning, mother and child are issued into the examination tent. A small crowd forms around the pair. Oceane has excitement in her eyes, and Philomene’s face displays pure joy. Dr. Gary Parker smiles in recognition.
Philomene, Oceane and Dr. Parker enter a curtained-off portion of the tent. A few minutes go by before they pop back out. It is a good report. “Oceane is quite an amazing little girl,” says Dr. Parker. “To see her able to see, to hear, to respond to her mom, even to walk … it’s amazing.”
But Oceane’s smile and her mother’s joy don’t come as a result of a perfect fix. The encephalocele affected her brain deeply, and its trace will never entirely depart. She has come today – at the age of seven – strapped to her mother’s back. Her head will always be rather small. “Nowhere in the world do we have good answers to that,” says Dr. Parker.
Later on, Philomene talks to one of the ship’s writers. From behind her mother’s back, Oceane plays an endless game of peekaboo. Whenever she pops out, she starts giggling, as if this is again the first time.
Before Oceane had surgery in 2009, Philomene had refused even to leave the house because she was so ashamed. Now she looks at Oceane and smiles. ”My heart is filled with joy,” she says. “I have nothing else I could ask for … because my daughter is alive.”
Story by Anna Psiaki