Mom's
persistence saves life of her son
Hardin County Kenton Times Online Edition Friday October 18, 2002 By DAN
ROBINSON Times staff writer
RIDGEWAY - To a visitor to the Ridgeway home of Don and Kasey King, their two children seem like most youngsters. They laughed at "Monsters, Inc." as the movie played on the TV and begged for a treat of candy from their parents. But their mother told of the traumatic times behind them and their hope for the family's future. When Austin was a toddler, his parents had noticed a ridge running from his nose to the soft spot in his skull. "It looked like a speed bump on that suture," said Kasey. At 15 months, Austin had fallen behind developmentally, said his mother. For the first 12 months of his life he had been normal. He had begun to say "Mama" and "Dada," but the progress had stopped. She asked the pediatrician about the problems and was assured there was no need for concern. But the Kings were concerned.
They sought further help when Austin had problems standing and keeping his balance. An MRI revealed the sutures of his brain had been fused at birth. Austin was suffering from craniosynostosis and chiari malformation. The five bones in the skull are held together by fibrous material called sutures. This allows the brain to grow as the skull expands with the growth. Austin's skull had stopped expanding after 12 months. With nowhere else to go, the brain had expanded downward toward the spine, leaving cerebral "tonsils" which were keeping fluid from getting to his brain. Surgery would be needed, the family was told by specialists in Columbus. At the age of 18 months, surgeons removed a section of Austin's skull to allow his brain to expand properly. "He woke up after the surgery eating and drinking like someone had reprogrammed his brain," recalled Kasey. Eating and drinking had been difficult for Austin, she said. The textures of food had made him sick and he usually refused any kind of drink. To see her son eating and drinking normally gave the Kings hope Austin was back on track. That optimism didn't last long. Eight weeks later, Austin was gagging on food and dehydrating. She called the specialists in Columbus and was assured there was nothing to worry about. But the Kings were worried. "They didn't believe there was anything wrong," said Kasey. "But Austin couldn't even stand up." Unwilling to accept the problems were just temporary conditions from the surgery, the Kings sought advise from specialists in Cincinnati.
More surgery was needed, they were told. This time surgeons removed more of the skull, cut away some of the leathery covering of the brain and replaced it with softer tissue. They also colterized the "tonsils" protruding from the back of the skull. Electrical current was passed through the tonsils to shrink them and allow blood and fluid to flow to the brain. Usually the cerebral tonsils don't grow, doctors told the Kings, but Austin's had grown 6 millimeters in six weeks. The surgery had taken place in August. By Thanksgiving Austin was worse than ever. The back of his head and the base of his neck were growing measurably, Kasey said, to the point the boy's skull was shaped like a triangle. "His head was changing rapidly," said Kasey. "He wouldn't eat or drink. They had opened the skull in the back, but the front couldn't grow. It was the ruination of his life." Austin spent days and nights screaming in pain. He took his toys and hit himself in the head along the sutures until his scalp was bruised. Doctors still refused to believe there was a problem. The Kings knew there was. Kasey began to search the Internet for help. The medical world was letting her son down and she refused to believe there was nothing to be done to help him. As she searched for an answer, she found a website, www. CAPPSkids.org, where people who were experiencing problems with craniosynostosis talked. In a lengthy letter, Kasey posted her situation. Another mother of a craniosynostosis child responded. The Kings needed to contact Johns Hopkins Hospital in Maryland, they were told. A surgeon there was one of the leading authorities in the world on the disorder. "We were so excited someone could help us. Someone was listening," said Kasey.
There was no Thanksgiving in the King house last year, said Kasey. Austin was too sick, but doctors at Johns Hopkins had given them hope. They requested his medical records, but didn't give the Kings any promises about how soon their son would be seen by the staff. December was a very busy time in the hospital, they were told. But the Kings refused to give up. Their persistence saved Austin's life, they learned later. When Johns Hopkins hospital received the boy's medical records, it made an exception to its scheduling problems. The Kings were to fly to Maryland right away for emergency surgery. As Austin's brain continued to grow, his parents were told, it had eaten away at the skull, leaving the normally smooth surface shaped like scallops. "They said the inside of his skull looked like Play Doh, where someone had pushed their thumb all around it," said Kasey. The surgeons made a wavy incision across Austin's skull, going from ear to ear. They replaced the thin parts of the skull with absorbable plates and screws, held together by titanium wire. When the surgery was over, Kasey and Don thanked the doctor for saving their son's life. He agreed. Without the procedure, Austin wouldn't have lived until the first of the new year, he said. That was only nine days away. He was released from Johns Hopkins on Christmas. "That was a huge Christmas present," said Kasey. "To be home as a family on Christmas day was a miracle." But with the new year came bad news again.
While Austin continued to make big strides, Madi, the King's four-year-old daughter, began to show signs of having craniosynostosis. Headaches and loss of appetite were the beginning signs. The condition was milder than her brother's, but had been aggravated by the change of pressure in the plane ride to Maryland, the family believes. By April, Madi was needing help. She complained of pains in her head and legs. She was sensitive to light and sound. Her speech began to suffer and her ability to stand or walk had forced her to spend most of her time in a stroller. "It was hard to keep optimistic," said Kasey. "When Madi was diagnosed with the same thing, it was hard to swallow. That was a huge setback." But the Kings knew where to go for help. Madi will undergo her second surgery to correct the disorder next month. "We hope when we get that behind us, we can get back to a normal life," said Kasey.
Research is underway to determine the cause of craniosynostosis, said Kasey. Some believe it is genetic in origin, others think environment or pregnancy complications may be the answer. Information on the disorder can be found at www.CAPPSkids.org or www.wacma.com or www.drbencarson.com. Austin continues to show improvements since his last surgery. He now has a vocabulary of 17 words. One of the biggest challenges was to convince the boy he could eat and drink now without pain being the results. "It's amazing to me," said Kasey, "that his body was telling him not to eat or drink because the more liquids he took in, the more pressure was on his brain. His body was attempting to avoid pain ... He has made great strides. There is no reason to believe he won't fully recover." Another part of Austin's recovery has been through horseback riding therapy at Morman Valley Farms near Zanesfield.
The ordeal the King family went through is the subject of a Woman's Day article. The magazine will feature the story in its Dec. 10 issue. Some have suggested the family sue some of the doctors for malpractice. They have decided against legal action and hope to redirect their attention to writing a book about the problem so others can be helped. "The kids need our time now," Kasey said. "We can spend time being a family rather than sitting in an attorney's office. Besides, that's just not us." Perhaps the greatest lesson learned from the experience, said Kasey, is that parents should not just accept the word of one physician when they know something is wrong with their child. "If you think something is wrong, keep looking," she advised. "Everyone thanks us now for pushing for this, but things were very different when we felt we were all alone. Doctors are human. They make mistakes, too." Kasey added, "If it had not been for our continued pushing, we would have lost him.