Katy & Micki's Story
A Heartbreaking Past (Neurocritical Care)
Something was terribly wrong with 4-year-old Katy. Fever and nausea aside, this was more than a simple case of the flu. The vacant look in her eyes was alarming, and Katy's parents called for an ambulance to take her to Phoenix Children's.
Katy was no stranger to doctors. Jim and Leslie had adopted Katy and her twin sister, Micki, when the girls were just 18 months old. Micki was a healthy, active baby. But Katy had been shaken violently by her father when she was 6 months old. The resulting brain hemorrhage and retinal bleeding caused permanent damage. Jim and Leslie didn't think twice about accepting this challenge, and Leslie admires the twin's birth mother for her unselfish strength in seeking the best opportunity for her daughters.
A Parent's Worst Fear
Upon her adoption, they took Katy to a neurologist at Barrow at Phoenix Children's. Given the level of brain damage, it was surprising Katy could walk and talk. The doctor explained young brains are very adaptable, finding ways to reroute information around the damaged areas. He slowly weaned Katy off the heavy doses of medicine she was taking to control seizures. A sweet, loving and engaging child emerged.
Jim and Leslie had taken Katy's medical needs in stride. They'd known that life would be an uphill battle for her, but now, rushing their daughter to the Hospital it had turned into a roller coaster ride. When doctors finally delivered the news, it confirmed their worst fears. Katy had experienced a stroke that had destroyed the right side of her brain. She was in a coma.
The next days were a blur of confusion, but Leslie clearly remembers the first thing that elicited a response from Katy. Her Uncle Mark entered the room and started making the loud, goofy noises she loved. Katy looked at him with a glint of recognition, and they knew she was out of the woods.
More Bad News
Katy surprised everyone by regaining strength quickly. She was discharged and began a rigorous schedule of rehabilitation therapy at the Hospital's outpatient center. But the roller coaster ride wasn't over. Katy started having seizures again, but these were much more severe than those she'd had as an infant. Despite heavy medication, the seizures worsened to a level of more than 20 per day.
Their neurologist told them of a surgical procedure that might control the seizures called a hemispherectomy ... it would mean removing half of Katy's brain. While it was the toughest decision in their lives, Jim and Leslie knew it was Katy's only chance for a quality life.
"The neurosurgeon told us he would need to remove the motor strips from Katy's brain, so it would probably take a couple years for her to walk again," says Leslie. "But our biggest fear was losing the 'essence' of Katy. We knew her personality could be radically changed."
The six-hour surgery and subsequent lengthy hospital stay was a frightening time for Katy's parents. They took turns at the Hospital so that one of them could be home with Micki in the evening. A petite fireball, Micki had a tough job as she balanced her concern for her sister with the inevitable feelings of jealously that Katy was receiving all the attention - again. Her parents are enormously proud of how well she handled it.
A Phenomenal Recovery
Katy's recovery was nothing short of phenomenal. In six weeks, she was walking. "She has so much determination," says Leslie. "She didn't like the wheelchair, so she just decided she'd learn to walk." That meant Katy was still Katy.
Today, at age 8, Katy is only slightly behind the other second graders at her school, and she continues to make progress with speech and occupational therapy. What has most impressed her parents is the amount of cooperation and support they've received from other parents, teachers, Katy's classmates and the many PCH staff who had a hand in Katy's care.
"It's a wonderful illustration of the old saying that it takes a whole village to raise a child," says Leslie.