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Freeland toddler recovering after risky brain surgery
Little Aaron Maher of Freeland came through his four-hour brain surgery on Tuesday, and appears to be recovering well in intensive care, his mother said.
“He’s talking more, and we saw a couple of smiles today,” Rebecca Maher said Thursday morning.
As of midday Friday, Aaron was progressing nicely, she said. If he remains fever-free for 24 hours, the family will be allowed to go home, she said.
Aaron, 13 months, underwent surgery at Seattle Children’s Hospital after being diagnosed about two months ago with Chiari malformation, a rare brain disorder in which the cerebellum, the back part of the brain, outgrows the skull and expands into the spine.
The disorder caused a number of symptoms, including headache, difficulty swallowing, pain and weakness, hoarseness, numbness, pins and needles, visual disturbances, balance problems and at times, loss of consciousness.
“They didn’t do everything they wanted to do because they felt it was too risky,” Maher, 27, said of the surgery. “He’ll still need quite a bit of recovery time, but not nearly as much as he would have.”
She said the neurosurgical team removed some of the back part of Aaron’s skull and the first vertebrae, and made slits in the dura mater, the fibrous membrane that covers the brain and the spinal cord.
Doctors plan to do another magnetic resonance imaging (MRI) in three months to check for herniation and to make sure no syrinx has developed. A syrinx is a fluid-filled cavity within the spinal cord or brain stem.
Maher said the family is facing a recovery period of four to six months, shorter than what would have been required if the more-risky surgery had been performed.
She said follow-up surgery will be necessary at some point, but the family hopes it won’t be for a year or two.
Maher said concerns arose Wednesday night when Aaron suffered severe swelling and drainage, bursting his intravenous mechanism. He also battled temperatures as high as 103, but he was more stable by morning.
She said the first 48 hours after surgery are critical, especially in regard to infection, but there has been no infection so far.
Maher said the surgery appears to have fixed some of Aaron’s other problems, which have sent him to a doctor or hospital every week of his young life.
For example, the procedure seems to have alleviated much of the pressure in his head, she said. It also relieved the aspiration of food and drink caused by his tracheomalacia, a weakness of the walls of the trachea which was diagnosed shortly after he was born.
“He’s still having a hard time,” she said. “When he does, I just hold him and try to keep him calm.”
Aaron’s mother has been staying at the hospital around the clock since the surgery. His father Jason, 30, sister Julia, 5 and brother Ian, 4, have been staying at a nearby hotel between visits.
Jason Maher works in the produce department of PayLess Foods in Freeland. The family has medical insurance, but the mounting cost of travel, lodging, food and childcare for a family of five associated with Aaron’s medical situation, plus the anticipated expenses related to his long recovery and possible followup surgery, continue to weigh heavily on the budget and the nerves.
Members of the South Whidbey community have helped organize fundraisers for the family, and a “Baby Aaron Brain Surgery Fund” has been established at Whidbey Island Bank branches.
Meanwhile, members of the Unity Church of South Whidbey also are coordinating fundraising efforts and are scheduling contributions such as house cleaning, babysitting and meal preparation.
“Right now we’re just watching and waiting,” Rebecca Maher said of Aaron. “We’ve got a long way to go.”
And she thanked the South Whidbey community for its support.
“We appreciate everything,” she said.
For information on how to help the Maher family, call Joyce Small at
579-2617 or Beverly Graham at 341-1852.