November 30, 2008 --   

Ed Note:  The following is reprinted from the Melrose Free Press, with permission of Community Newspaper Company.  It first was first published December 27, 2006.

By Travis Lovett and Carol Brooks Ball

This year, Dawn and Rich Correale celebrated Christmas as if it were a miracle. And for their family, it was.
Melrose - In August, the Melrose couple found out their seven-year-old son, Shane, had a Chiari Malformation (pronounced “key-are-ee”), a condition where a portion of the brain — called the cerebellar tonsils — extends beyond the base of the skull and down into the spinal column. The resulting compression of brain tissue can cause balance problems, loss of fine motor functions, and chronic headache pain.

“Shane was taking swimming lessons [this summer], Dawn Correale remembered, “and I noticed each week that he struggled to get out of the pool. I knew something wasn’t right.”

Correale and her husband took Shane to his primary care physician in Melrose, Dr. Rhonda Fogle. Fogle examined Shane and referred him to a MRI specialist for more tests.

The MRI revealed that Shane’s cerebellum — the end portion of his brain — descended 20 millimeters into his spinal cord — and that meant surgery was required to fix the problem.

“It was Aug. 21 when the call came in [on their answering machine],” Dawn remembered. “Who knew how much our faith would be tested this time? I knew from the doctor’s message that things were not good. You could just tell by his voice, by the sense of urgency to speak with us. Then he called back and said, ‘I am sorry to tell you this over the phone but Shane has a significant Chiari Malformation, which is 18 millimeters and means that part of his brain is in his spinal canal.’”

The doctor went on to tell Dawn that he’d already conferred with the neurosurgery department, and that they wanted to see Shane that week.

“I was writing down everything he was saying, crying, sick to my stomach, and trying to get my husband’s attention out in the front yard,” Correale said. “He saw me and knew it wasn’t good. He stopped the lawnmower and came running in.”

The Correales could have left the Chiari Malformation untreated, but they were worried about the effects the condition could have on Shane as he grew older. Often, Chiari patients develop syringomyelia — a condition where a fluid-filled cyst called a syrinx forms in the spinal column. In the end, they opted for the surgery to be performed.

Rick Labuda, executive director of the Chiari and Syringomyelia Patient Education Foundation based in Wexford, PA, said surveys show that about 84 percent of patients experience a “significant improvement in their quality of life” after Chiari surgery. Labuda’s Web site, www.conquerchiari.org, provides a support network for families of Chiari patients, and was a source of comfort and information for the Correales.

Through Labuda’s site, Dawn Correale connected with other families who had similar experiences. After reading a story about Jack Carmigiani, a child in Pennsylvania who was diagnosed with a Chiari Malformation, the Correales’ decided to give the Carmigiani family a call. Rob Carmigiani, the boy’s father, gave the Correales’ support and advice about finding the right surgeon.

“Rob Carmigiani was not surprised to hear from us,” Dawn remembered. “He was anxious to help and he became our guardian angel. He spent hours talking about his family’s experience with his son’s Chiari surgery. No words can express our gratitude for the resources he supplied us with and the comfort he gave us, telling us the good and the bad, and helping us ask questions that we would have never known to ask. Hearing things from another parent made all the difference.”

The Correales had searched across the country for a surgeon and were even prepared to travel to California when they discovered Dr. Mark Proctor at Children’s Hospital in Boston. Proctor came highly recommended.

“He put up with all of our questions and we asked hundreds of them,” Dawn said. Throughout the ordeal, she added, Shane’s physicians locally provided comfort and support.

“Our primary care physicians here in Melrose are wonderful,” Correale said. “They called every day and came to the hospital after the surgery.”

Dawn Correale said it was hard to break the news to Shane.
“We told him what we thought a seven year old could handle,” Correale said. “But we weren’t going to lie to him.”

Dawn said the day of the surgery “seemed like an eternity.”
“We had our family and a couple of friends there to support us,” she said, “and a visit from Dr. Fogle and her daughter, which was comforting. But the waiting seemed like an eternity.”

After a four-hour surgery, Dr. Proctor came out to meet with Dawn and Rich and explained how the surgery had gone.

“He came walking towards us with a smile on his face, which was a great sense of relief,” Dawn said. “He drew on his pants and explained that he opened [Shane’s] skull, performed a craniectomy (the surgical removal of a portion of the cranium), performed a C1 laminectomy, opened the dura, coagulated the brain and then put in a graft. It was a relief to have the surgery over,” she said.

In the days and weeks after the surgery as Shane recovered, Dawn said it was not without some bumps.

“Initially, after the surgery, to see his pain was unbearable to watch,” she remembered. “His recovery went well with one rare complication that has since resolved.”

In six months, Shane will have another MRI of his brain.

“In the end, we are not sure where this journey will lead us, but if Dr. Proctor is correct, we have put the Chiari Malformation behind us,” Dawn said. “In the meantime, we pray that Dr. Proctor can do for others what he has done for Shane. People say, ‘Oh, the time went by so fast.’ For us it has been an eternity.”

Meanwhile, Shane continues to recover well. In fact, his mother said, he’s looking forward to playing sports again.

“Baseball and hockey are his favorites,” Dawn said. A highlight for Shane was when professional hockey player Patrice Bergeron, center for the Boston Bruins, sent him a signed hockey stick. Shane also received a signed photo from Red Sox player David Ortiz. Although Shane might not be able to play hockey for a while, Dawn said he could play baseball today if it were in season.

Correale said the support of the couple’s friends, family, and the community really helped her family get through a rough time. This Christmas, she said, they have much to be thankful for, especially when it comes to Shane’s health.

“[Shane has] been through so much.” she said. “We don’t take our health for granted.”

Dawn Correale said the most amazing experience of her son’s Chiari Malformation diagnosis and subsequent surgery has been the support of family, friends and Melrosians.

“The compassion, friendship, love and hope that one little boy has brought to our family, friends, school and community is amazing,” she said. “We are grateful for the miracle we have and we would like to thank so many people for their thoughts, prayers, visits, phone calls, emails and gifts that truly lifted Shane’s spirits; the gift cards so that we didn’t have to think twice about dinner and coffee at the hospital; the decorations around our house; and all the special treats. Through all of our heartache we have experience the kindness and compassion of so many people and we thank you for caring about our son.

“We’d like to extend our thanks to our parents, Shane’s aunts and uncles an dour our relatives and friends. Thanks also to the Winthrop School community and to Donna Hanks, Bryna Davis, Terry Greenberg, Virginia Samalis and many of the teachers. To Lori Burns and Jen Mazzei — you are full of compassion and are amazing teachers.

“To Shane’s second grade class and all of his friends, you should be so proud of your kind ways.

“And to our son Shane — know that you are so brave and strong. You are an amazing little boy. Keep smiling.”
 

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