Pediatric Neurosurgeon Dr. Peter Sun and Laura, nine months after Laura's surgery.
Last June, Kim Bowlby was driving home with her daughter, Laura, who had just had an MRI. Kim remembers that day like it was yesterday. Laura, then 10, turned to her mom and said, “You know mom, I learned a lot this year. I learned that there are a lot of children in pain and that life is serious.” But in the months to come, Laura would also learn that there is hope—and sometimes a cure—for children in pain and that life’s seriousness goes hand in hand with happiness.
Laura was 5 years old when she started experiencing chronic headaches. Far from being a complainer, she tried to learn to live with pain. “We would be leaving the house in the morning, and I would lock the door, turn around and see her laying on the sidewalk, waiting for the car,” Kim remembers. “‘Does your head hurt?’ I would ask, and she would nod, ‘Yes, it does.’”
For a long time physicians and alternative medicine practitioners were equally helpless in their efforts to diagnose the cause of Laura’s chronic headaches. Pain medications had moderate success, bringing the occurrence of headaches down to two or three days a week.
A year ago, Laura’s neck started hurting, too. “At the beginning, I thought she had a cold,” Kim says. “I massaged her, I gave her Tylenol, and waited for the pain to go away.” But instead of getting better, the pain became almost incessant. Physicians prescribed an analgesic anti-inflammatory but it only dulled the pain for a bit. “Four hours later, she would be in great pain again,” Kim shares. “Her life was organized around the pain. At school they allowed her to wear a collar and warm it up in the microwave. She took medication every four hours. I would come home from work and find her lying on the floor with her book up, because she felt the position helped the pain. She became irritable and depressed.”
Kim says she’s not sure what was worse, seeing her daughter in pain, or the uncertainty that brought. “It was really hard not knowing what was wrong, because I knew something had to be very, terribly wrong to cause such pain,” Kim remembers. She was right: Laura had a tumor on the odontoid process of the second vertebra.
The odontoid process is a peg of bone extending upward from the second cervical vertebra. It represents the pivot point around which the first cervical vertebra rotates during head movements from side to side. Multiple X-rays did not reveal the tumor because it was high in Laura’s neck and the many overlaying shadows in that area obscured it. In addition, spinal tumors in children are rare, especially in that location, so for years Laura’s physicians looked for other possible sources of the pain—from sinus infections to a sprained neck.
The day the MRI was done Kim left work early and came to the office of Children’s Hospital Oakland neurologist Daniel Birnbaum, MD. It was Friday, and Dr. Birnbaum planned to leave on vacation the next morning, but upon seeing the MRI decided to come back Saturday morning and seek a second opinion from a pediatric radiologist. Things didn’t look good: it appeared as if Laura’s bone was disintegrating. The tumor didn’t show well on the MRI, and what Children’s specialists saw was its effect on the bone. Laura was admitted to Children’s immediately. After a CT scan and four days of tests, Children’s physicians diagnosed her tumor.
But there was a new challenge. Laura’s neurosurgeon, Peter Sun, MD, explains that only surgical treatment could deliver a cure. Chemotherapy, radiation or other medical modalities would be ineffective against this type of tumor. If surgeons didn’t operate, the tumor would erode the bone and would press against Laura’s spinal cord. But some physicians, Laura’s mom says, doubted a successful surgery was possible. Could the tumor be reached?
“You can’t go through the back, because the spinal cord is in the way,” Dr. Sun says. “The only possible way to get to the tumor is through the mouth.” Trans-oral surgeries are rare, most commonly seen in adult patients with rheumatoid arthritis whose cervical vertebrae are affected. Operating on children is even harder, since their mouths, necks and bones are smaller. In children, chances of a tumor in that location are slim. “I’ve treated children with tumors in the spine,” Dr. Sun says, “but they have been either lower in the neck where you can access them through the front of the neck, or further down where you can reach the spot through the back.”
Dr. Sun and Children’s cranio-facial plastic surgeon Bryant Toth, MD, operated on Laura together. Dr. Toth’s experience in cleft palate correction was useful in making a very precise incision in the back of Laura’s pharynx. The girl was connected to highly sophisticated computerized equipment that matched the CT scan images with Laura’s head and neck and guided the surgeons through the operation.
“One of the very special things about Laura’s cure here was that so many subspecialists worked together to diagnose her and treat her: neurologists, radiologists, plastic surgeons and neurosurgeons. It was great to all come together and help Laura,” Dr. Sun says.
“In years of working in neurosurgery I had never seen an operation through the mouth,” adds Sue Ditmyer, RN, PNP. “It was incredible.”
For Kim, in retrospect, Laura’s hospitalization was much easier than she expected. “Children’s Hospital puts regular hospitals to shame,” Kim says. “I know because I am a nurse myself. I can see the difference. I was so impressed by the respect and understanding my daughter received. Staff took her concerns as very important and valid. Doctors and nurses were able to talk with her about her worries in a way I wouldn’t have had the patience to do. They absolutely cared for the children, and didn’t care about the clock ticking.”
Kim still speaks with amazement about Laura’s recovery. “It was miraculous. Two days later she was off pain medication, and she started school with all her peers just five days after the surgery.” Laura’s tumor was benign, and she is healthy, energetic and pain-free again.
“I can’t take it all for granted,” Kim shares. “I know how lucky I am to be living in a place and at a time that made the cure of my child possible.Words seem so inadequate when I try to express my gratitude to everyone who helped us.”