In 1992, Julie Garrett lost her son to a brain aneurysm when he was 4 years old. Fifteen years later, she feared her daughter Katherine Delaney Kennedy would meet a similar fate.
Delaney was diagnosed with tuberous sclerosis complex, a neurological condition which caused Delaney to suffer from epileptic seizures so severe and so frequent (100 seizures a month), they left her completely debilitated. She was unable to attend school on a regular basis, which caused developmental delays.
Delaney has been to Cook Children’s twice previously through a referral by their physician in Oklahoma City. During those visits to Angel Hernandez, M.D., medical director of the Cook Children’s Comprehensive Epilepsy Program, Delaney and her family finally received promising news that an operation potentially could end the little girl’s seizures. This gave the family tremendous hope.
As they prepared to leave for their trip from Oklahoma City to Fort Worth, an ice storm loomed, which would make the drive a treacherous one for Julie, her husband Bill and Delaney. But the fear of weather paled in comparison to the concern for Delaney’s life.
“I had seen my son die already,” Julie said. “That gave me a sense of urgency. They were similar ages. I wanted to do something. I would do anything. They were giving her the maximum dosage of medication and it wasn’t doing anything. We had to do something to fix her. Delaney told me, ‘Mommy, I don’t like seizures.’”
The family packed their belongings and left on a Friday in January 2007, in hopes of beating the predicted six inches of ice. After making it safely to the nearby suburb of Burleson, Texas, Julie, Bill and Delaney woke up Monday to travel to Cook Children’s for the surgical procedure they hoped would end Delaney’s seizures.
On the way to Cook Children’s, their hopes were almost dashed.
A truck hit ice and slammed into the car that Julie was driving. The impact almost severed Julie’s arm, and she was rushed to a local Fort Worth hospital by helicopter. Doctors had to amputate her arm to her shoulder. Fortunately, Bill and Delaney were less severe. An ambulance took Delaney to Cook Children’s.
Despite the chaos and the physical and emotional pain from the loss of her arm, Julie’s concern stayed with her daughter.
“I was mad,” Julie said. “I was afraid having the accident would delay the surgery. Honestly, I wasn’t even thinking about what was going on with me. I was irritated that Delaney wasn’t going to have her surgery.”
Director of Cook Children’s Neurosurgery David Donahue, M.D., performed the first part of the surgery – grid placement – on Delaney the same day Julie’s arm was amputated. The following week, Dr. Donahue was able to resect the remainder of the tumor causing Delaney’s seizure.
Julie raves about Dr. Hernandez and Dr. Donahue, who came to her hospital to meet her and to give an update on her child. The Child Life specialists at Cook Children’s used special education dolls and books to explain to Delaney what happened to her mommy and how she would no longer have an arm.
“The book was about a tree that lost its branches,” Julie said. “It was perfect because I lost one of my branches.”
But it wasn’t just the physicians and Child Life specialists at Cook Children’s who impressed Julie.
“We received absolutely the best care,” Julie said. “Twice, we stayed at the Epilepsy Monitoring Unit and everyone from the cleaning lady to the lady in the garage to the nurses, everybody … They were all so great. I’ve never seen a place with such great care. And everyone in my family told me everything was just as great when she was there on the third time with her surgery.”
Delaney, now 8, has not had any seizures since the surgery and Julie said she is like a different child. Delaney has made great strides in school. She can be heard chattering away when Julie is on the phone, sounding like any other little girl at the center of her parents’ attention. Delaney loves to sing, dance and has become quite the comedian.
“I don’t have any regrets,” Julie said. “I would do it all over again, just because she has had such a wonderful outcome. I can live without an arm. I did not want to live without my daughter.”
