• By Dana Sparks

Sharing Mayo Clinic: 14-Year-Old Writes the Book on Beating the Odds

February 19, 2017

Nathaniel Kirera wasn’t expected to survive birth. When he did, then he wasn’t expected to live to see his first birthday, much less his 14th. He also wasn’t supposed to be able learn, let alone write a book. But he’s done all that, and today his medical odyssey is behind him.

That Nate has achieved so much despite having multicystic hydrocephalus, a condition in which half of his brain and its fluid drainage system formed abnormally, is no surprise to his mother Ann Makena, who, while she was pregnant, dreamed of a son walking and talking.

“The doctor said. ‘I’ve seen very bad conditions, but I’ve never seen anything this bad,’” Ann says. “I said, ‘It’s not that I don’t trust you … but I really felt very confident about this child. I said, ‘No I’m just going to leave it up to God.’”

Nate’s successful birth isn’t the only marvel Ann believes has graced her family’s life. Coming to Mayo Clinic’s Rochester campus and meeting pediatric neurologist Katherine Nickels, M.D., in the  Division of Child and Adolescent Neurology was another wonder from Ann’s point of view.

“The first day I spoke with Dr. Nickels, I’ll never forget that day,” she says. “She is an amazing listener; she is so compassionate. You can feel her heart when you are speaking to her.”

 A roller coaster of surgeries and seizures

 When Ann and Nate arrived at Mayo Clinic, Nate was 9 years old. The preceding years had been filled with seizures, medications and surgeries. He’d had 14 surgeries before he came to Rochester.

Immediately after birth, Nate was outfitted with a shunt system to mitigate the effects of having multiple, fluid-collecting pockets in his brain. The fact that more than one pocket existed meant the shunt required multiple revisions and the insertion of more than one catheter to drain the cerebrospinal fluid.  Read the rest of Nathaniel's story.

This article originally appeared on the Sharing Mayo Clinic blog.