Her journey has been a long one. Severely disabled as a baby in Uganda because of a stroke brought on by malaria. Abandoned by her birth family. Adopted at five-years-old by an American woman volunteering in Africa. For Mikisa Felten, now nine-years-old, the fog of debilitating epilepsy is lifting and she is on the road to a childhood her American parents have fought so hard for her to have.
“I was very aware of her challenges when I adopted her,” said south Charlotte mom, Christina Felten. “Mikisa was so malnourished when I met her. She has epilepsy, most likely caused by the stroke she had as an infant. She was non-verbal, couldn’t walk and was having severe seizures daily. All of that delayed her development greatly.”
Christina married soon after returning home to Charlotte with Mikisa, and a year later she and her husband had a baby girl, making their family an even four. Mikisa continued struggling with epilepsy, and her parents continued to hear from doctors – seven neurologists were consulted – that nothing could be done for their little girl. The only option, they heard, was medication to keep her comfortable. “Those answers were not good enough; we wanted more for her,” Christina said. “So we kept looking.”
After seeing Kate Van Poppel, MD, a pediatric neurologist with Carolinas HealthCare System, the family was presented with a radical surgical option: separating the hemispheres of their child’s brain. “This was the first time someone had mentioned brain surgery, so we were skeptical. And scared,” said Christina.
The couple met with pediatric neurosurgeon Mark Van Poppel, MD, from Levine Children’s Hospital. Dr. Van Poppel – incidentally, married to Dr. Kate Van Poppel – specializes in pediatric neurosurgery and determined quickly that Mikisa was a perfect surgical candidate. “A hemispherectomy is a fairly rare and very involved surgery, and one not commonly performed here in Charlotte,” he said. “I was confident Mikisa would respond well to this treatment. It requires a well-trained pediatric neurologist, a pediatric neurosurgeon and a pediatric epilepsy team (which we now have in Charlotte) working together.”
The team performed the surgery late in 2014, shortly before Mikasa turned nine. “It was very scary; it took five and a half hours,” Christina said. “Dr. Van Poppel was great about communicating during those long hours. He had the nurse call every hour and give us an update.”
With the surgery behind them, the family knew they were in for a long recovery. After weeks in the hospital, Mikisa began showing signs of improvement. “Sure enough, she was back on her feet and walking after four weeks,” Christina said. And now? She’s running and jumping, and her mom reported that although she still has severe hearing loss, she’s making up for lost time developmentally.
“What the doctors gave us was a fresh start for Mikisa – a re-set button,” Christina said. “We now have hope. We don’t know what the future will hold and whether she will ever be fully independent. But this provides so much more opportunity for her.”
Mikisa’s speech is improving steadily and she continues to make developmental gains. Her doctors said they are “extremely optimistic” about her future. “She has already made huge gains since surgery and is seizure free,” Dr. Mark Van Poppel said. Mom Christina puts it more simply: “She is so full of joy.”