The Kilbey family (from left): D.J., Damon, Janele and Alexis

Learning to live without

Losing most of the right side of his brain to surgery does not slow down D.J. Kilbey

by Marc Whitney

In 2003, Janele and Damon Kilbey of Waukesha, Wis., anxiously awaited the birth of their second child, a son who also would be welcomed by big sister Alexis. After an uneventful pregnancy, Janele gave birth to Damon Jr., (D.J.) on June 13. Within 44 hours, Janele was tearfully telling her husband, "I can't bury my baby."

The whirlwind that overtook the Kilbeys during those two days was the beginning of an odyssey that continues today. D.J. not only survived, he thrives. The journey that brought him to today was aided by talented medical personnel, fortunate timing and the faith one family has put in both.

"D.J. did not eat well his first day," Janele recalled. "There was discussion at the birthing hospital to force feed him through a tube. By the time we got a second opinion, the problems brought on by lack of feeding led to an order for a CAT scan."

The scan revealed a mass on D.J.'s brain. Doctors could not immediately tell if the mass was a tumor or something else. What they did tell the Kilbeys was that D.J. was headed for Children's Hospital of Wisconsin.

"Things aren't supposed to go wrong for children, especially newborns," Janele said. "We live in this fantasy world until something like this happens to you or someone you love."Reality intruded on the Kilbeys' fantasy when a chaplain came to pray with them as the Children's Hospital Transport Team arrived.

"D.J. had a seizure within two minutes of the Transport Team's arrival," Janele said. "The way they worked on him and helped him was awesome."

Once stabilized, D.J. was safely transported to Children's Hospital. Janele and Damon were greeted there by pediatric neurosurgeon Cheryl Muszynski, MD, who provided two options: operate now – with no guarantee of the outcome – or take D.J. home and let him go peacefully.

Just days old, tiny D.J. soon would undergo lifesaving brain surgery.

"8:30 p.m. on a Saturday night and my 2-day-old son was taken away for surgery," Janele recalled. For the next six hours, the family waited, receiving periodic updates from operating room nurses via telephone.

"As much as we wanted to see someone face-to-face to tell us about D.J., we also knew that a call from a nurse on the phone was better than a surprise visit in person from a doctor."

Muszynski removed a blood clot from D.J.'s brain. As it was explained to the Kilbeys, a normal brain is like tofu. D.J.'s was watery Jell-O^®. The clot was so large doctors had to remove three-quarters of the right side of D.J.'s brain.

Complicating matters further, the clot had moved the brain from its usual location in the middle of the skull. D.J.'s brain had shifted 2 centimeters, and it would take time to move back to its usual spot.

"It was 4 o'clock in the morning when we saw him," Janele said. "His head was bandaged, and we never really saw the five tubes coming out of him or the machines that were breathing for him. It was our son, and we were grateful."

That explains the faith in the medical personnel, but what about the fortunate timing?

D.J.'s blood clot was caused by a malformation between a blood vessel and the brain. While the malformation occurs before birth, it usually is not noticed until much later – perhaps the teen years or even adulthood. In those cases, the surgery required to correct the problem can lead to a much different rehabilitation than D.J.'s.

Unlike an older patient, D.J. did not have to "relearn" anything following surgery, such as walking, running, speaking or using his hands and arms. "The rest of his brain is trying to help out the part that is gone," Janele said. "This is his life and how it always has been. The 'why me?' questions will be at a different level for D.J. than other patients."

Today, D.J. is in the 80th percentile in weight for children his age and average in height. Because the right side of the brain controls the left side of the body, most of the surgery's residual effects were isolated to his left side. He has a slight visual defect in his left eye that may lead to wearing a patch, but his overall vision is good and he wears no glasses.

Through the benefit of extensive therapy, D.J. is able to use his left hand and arm when he chooses. Considering how much of the right side of his brain was removed, that's a major accomplishment.

"D.J. walks, runs and plays with other kids," his mom says with pride. "He watches baseball with his dad, he likes his trucks and dinosaurs and playing at the park. His development always will be up in the air. It is day-to-day to see what he is doing and where he is going."

Speech problems sometimes slow D.J., but not for long. "He has never given up on anything. He needs help sometimes figuring something out, but then when he's got it, he goes!"

The little things

When Janele looks back on her son's journey through Children's Hospital, she recalls the little things that meant so much to her and her family.

• Following D.J.'s surgery, Janele and Damon spent some time away from D.J.'s room in the Pediatric Intensive Care Unit. When they returned, there was a card for Damon. On the front it said "Happy Father's Day." Inside was a photo of D.J. "I had no idea it was even Father's Day," Janele said.
• When hospital staff had trouble removing D.J.'s feeding tube, they asked the Kilbeys to wait outside his room. "We were standing around, quite anxious, and a cleaning person came up without being asked and brought us two chairs. That made such an impact on us."
• D.J. spent only 13 days at Children's Hospital. "As we were leaving, a premature baby across the hall from D.J. was celebrating her three-month birthday. She had spent her entire life at Children's Hospital to that point,      and I am certain her family was treated as special as we were."