Before her surgery.
Last week at 1opm, after 36 hours of delays and travel, I safely arrived home. It's great to be home. A little overwhelming, but I am re-adjusting to the excitements and perils of the first world.
Here is a lingering patient story about baby Oceane to ring in the New Year.
While working in the communications office one of our photographers, PJ, grabbed my attention. “You need to have a look at this pre-operative photo.” I spun my chair around and was horrified by the image on his computer screen.
There was one-year-old Oceane. Tears were streaming down her eyes. Her mouth was grimaced in pain. A grotesque mass, larger than her head, hung from the back of her neck. The photo made me uncomfortable. Instinctively, I turned away. “Children aren’t suppose to experience that kind of pain,” I thought.
Oceane had an encephalocele- a rare neural tube defect characterized by sac-like protrusions of neural tissue through openings in the skull. A small gap in the back of her head, only 1.4 cm wide, was the root of her problems. It allowed cerebrospinal fluid to escape from her brain and collect in the ballooning skin in back of her neck, which formed the disturbing second head.
Oceane’s mother, Philomen, had brought to a Mercy Ships medical screening day in February. Upon evaluation, surgeons thought they could help her. They planned on removing the mass and placing a small tube in her brain. The tube, called a shunt, would drain excessive fluid from her head into her abdomen. However, the earliest surgical opening wasn’t until October. Philemon needed to take Oceane home and spend seven months waiting for her to receive surgery.
During that time, Philomen faced great discouragement. As the bulge continued to swell simple things like bathing Oceane began to scare Philomen. “When I gave her a bath, I never washed her head. I was scared the tumor would explode and the baby would die.” Others began to mocked Philomen saying, “Look at the horrible baby she has,” whenever she went outside. “I never replied,” she said. “I felt very ashamed and always stayed in the house.” Friends and family said Mercy Ships was making her wait because they couldn’t perform the surgery.
Despite the discouragements around her, Philomen never lost hope that Oceane could be helped. On Sunday, October 14, she brought her to the Africa Mercy. That evening, I walked down to the hospital to meet them. Oceane was helplessly lying on the bed, unable to sit up from the weight of the mass. “There is no way they are going to be able to remove that,” I thought to myself.
Cautiously, I introduced myself. I knew it was still uncertain she’d receive her surgery. She was scheduled for a neurosurgical procedure that normally required multiple surgeons, expensive equipment, and a follow-up stay in the Pediatric Intensive Care Unit. It would be high risk even with the boundless resources of Western medicine. We were on a hospital ship with half of those resources. The surgeons weren’t certain the operation would be safe.
Already, I could see high hopes and expectations in Philomen’s eyes. Oceane was wearing a hospital ID band and sleeping on an Africa Mercy bed. This was the moment had dreamed about for seven months.But the odds were still against Oceane. I didn’t want to act to excited for Philomen, not yet. I held the Oceane’s hand, told Philomen it was nice to meet her, and walked away paying, “God, please help that baby.”
The next day, a CT Scan of Oceane’s head was taken. The results spawned further discussions amongst the medical staff on the risks/benefits of her surgery. Finally, the medical team decided Oceane would receive surgery. Her big day was Friday. Thursday afternoon, I walked onto D ward looking for her, but the bed was empty. “Where is Oceane?” I asked one of the nurses. “She’s in the recovery room, she had her surgery today.” Five minutes later, a recovery room nurse walked into the ward holding a small baby with a white-turban of bandages. It was Oceane. Again, I was shocked. The mass was completely gone.
While the nurses listened to her lungs and connected to her to a heart monitor, Philomen came to the bedside. When she realized the mass was gone, she was speechless. All she could do was stand by her bed and hold Oceans tiny hand. For fifteen minutes, she stared at her daughter, oscillating between content smiles and joyful tears. I couldn’t hold back tears myself.
Throughout the next week, I continued to visit D ward. For the first time, Philomen could see the back of Oceane’s neck. Proudly, she tied Oceane to her back like other African mothers, and walked her up and down the hospital corridor. Philomen was glowing. “When I saw the baby in the surgery room, I was laughing. God has done something great in my life that has lifted me. I have to thank God and ask Him to bless Mercy Ships,” she said.
Three weeks after her surgery, Oceane came to the Africa Mercy for her final post-op appointment. I came down to the hospital to say goodbye. Smiling and laughing as she held Oceane in one arm, Philomen greeted me with an enthusiastic, “Merci, Merci, Merci Bocu,” French for, “Thank you, Thank you, Thank you very much.” She handed me Oceane, who stared into my eyes and reached out her small hand to grab my hair. All I could think was, “God has done a miracle.”
Story by Megan Petock
Photos by Megan Petock and PJ Accetturo