For the first 10 months of his life, Memphis Hart has been wracked by near-constant seizures.

        The little ones — the ones that caused his eyes to drift and his body to tense — happened too often to count. The big ones — the ones that caused his body to curl into a tight ball and interfered with his breathing — happened up to six times a day.

Sara Hawkins holds her son, Memphis Hart. (Glenn Hartong photos) | ZOOM |

        Yet despite uncounted 160-mile round-trips to Cincinnati from his home near Peebles, Ohio, none of the medicines offered by modern science has stopped Memphis' seizures. Without a treatment that works, doctors predicted the seizures would gradually push the boy into a coma-like state and eventually kill him.

        So on Thursday, Memphis' mother allowed surgeons at Cincinnati Children's Hospital Medical Center to attempt something radical — a two-step surgery to remove half the child's brain.

        Of about 25,000 surgeries performed each year at Children's Hospital, this kind of case occurs less than once a year. In the past 16 years, neurosurgeon Dr. Kerry Crone has performed only 11 other similar operations. And only a handful of such cases occur nationwide each year.

        The four-hour procedure was a success, doctors said. Memphis was recovering in intensive care Thursday and is expected to spend the next five to 10 days in the hospital while the medical staff watches for signs of bleeding, infection and other possible complications.

        Memphis' mother, Sara Hawkins, was relieved to see her son blinking his eyes and moving his limbs just hours after surgery.

        “When (the doctor) told me about the surgery, I was just shocked. I was thinking how could he live? I'd never heard of something like this before,” Ms. Hawkins said. “But they said the surgery was the only chance he had.”

Rare condition

        Memphis was diagnosed within a week of his birth with an extremely rare condition called hemimegalencephaly. For reasons that aren't well-understood, Memphis was born with the right half of his brain much larger than the left half.

        The larger half is malformed, which results in frequent seizures, Dr. Crone said.

Neurosurgeons Kerry Crone and Michael Petr operate on Memphis Hart Thursday. | ZOOM |

        Megalencephaly is thought to be related to a disturbance in the regulation of cell production during fetal development, according to the National Institute of Neurological Disorders and Stroke. What causes the disturbance isn't clear. Some think the cause may be a random genetic malfunction, but no genetic links to the condition have been identified, said Dr. Deborah Holder, Memphis' neurologist.

        Memphis was only four days old when his seizures became strong enough to affect his breathing; turning his hands and feet blue. Doctors pinpointed his problem during a nine-day stay at Children's and have been working with the family ever since.

        Memphis smiles and cries and plays very much like other babies, said his grandmother, Becky Hawkins.

        But there are signs he suffers from a major brain disorder. His malformed right brain has weakened his left arm and leg and made it difficult for him to hold his head steady. There is a bump on his forehead from the bulging right half of his brain.

        Over the months, his family has rushed Memphis to the hospital several times when it seemed that his interrupted breathing might kill him. Doctors have prescribed numerous anti-seizure medications in varying doses and combinations.

        At times, Memphis took as many as five medications at once, Mrs. Hawkins said.

        The only drug that has helped recently has been vigabatrin, an anti-seizure drug the family imports from Canada because it is not available in the United States. But even that did not eliminate the need for surgery.

        The disorder that Memphis suffers has been noticed as far back as the early 1800s, Dr. Crone said, but happens so rarely that doctors don't track the odds. A handful of cases occur each year in the United States, he said.

Memphis Hart

        For years, little could be done to help these children

        The surgical procedure is called a subtotal hemispherectomy. Counting physician fees and a week-long hospital stay, the operation costs $25,000 to $35,000, and is expected to be covered by insurance, hospital officials said. That figure does not include the medical care Memphis has received since birth, nor the post-surgery physical therapy.

        In addition to children with problems similar to Memphis,' surgeons occasionally perform the operation for children and some adults whose brains have been damaged by severe infections, like meningitis, and for those born with rare blood vessel defects.

        Before 1985, medical literature recorded fewer than 15 such surgeries involving patients with Memphis' condition, Dr. Crone said. Of those, more than 60 percent died within days or months from post-surgical bleeding and other complications.

        But in recent years, the survival rate from the surgery has improved dramatically, Dr. Crone said.

        That's due to better post-operative care, better anesthesia practices for infants, and performing the operation in two steps instead of one, which appears to reduce complications from bleeding.

        Of the 11 other surgeries Dr. Crone has performed since 1986, all patients have survived.

        In adults, removing half the brain would cause severe damage to motor skills and cognitive abilities, leaving people partially paralyzed and unable to talk. But when it is done during infancy, children can return to surprisingly high levels of function. This is possible because, unlike many other organs, the brain continues developing after a child is born — not just growing in size.

        “Basically, the portion of the brain that is left (after surgery) remaps itself, taking over the functions that previously were performed by the other side,” Dr. Crone said.

        For best results, this kind of surgery generally must be performed before a child reaches 18 months. Less than a year is preferable.

Memphis' prognosis

        Dr. Crone removed more than 60 percent of the damaged right half of Memphis' brain on Thursday. In a few months, a second operation will remove the rest of the damaged side of his brain.

        After that, as long as the remaining half of his brain is healthy, the seizures should end. Most patients stop taking anti-seizure medications within a year after the operation, Dr. Crone said.

        Once recovered from the surgery, Memphis faces six to 18 months of intense physical therapy, which is expected to help him recover most of his movement.

        “Some of these children show remarkable improvement,” Dr. Crone said.

        The first patient Dr. Crone treated, Brent Hammergren, is now 16 years old. He plays Special Olympics basketball and does volunteer work for the Blue Ash Recreation Center.

        There is hope, but no guarantee, that Memphis will fare at least as well.

        “I've met several of the families. Each case is different and they all end up with different levels of ability,” said Kim Hammergren, Brent's mother.

        However, removing so much brain tissue likely will limit Memphis' learning ability. He can expect to learn to talk and read and write, but less quickly than others his age. He probably will need special education through his school years, but he will likely be able to learn a vocation.

        How Memphis will fare as an adult is hard to predict, because so few children who had such operations have lived into adulthood to study, Dr. Crone said.

        Still, without the surgery, children like Memphis have little hope of living to adulthood if the seizures go uncontrolled, Dr. Crone said.

        “These seizures are extremely disabling. With the surgery, these children can walk and run and play again,” Dr. Crone said.

        Those are the things that Memphis' family prays to see.

        “They say he has an excellent chance at a normal life,” said Memphis' grandmother. “It's just a long battle ahead of us.”

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