The word “chocolate” makes her brain waves react, but she doesn’t respond to the voices of her children or to her own name. She occasionally opens her eyes and stares at the ceiling, but she won’t flinch if someone tickles her.
Denise DeSoto, 38, who once jumped out of a plane for her Christmas card pictures, can’t speak, can’t eat and relies on a machine to help her breathe while she sleeps. She went into a coma 3 1/2 years ago after hand surgery at UCI Medical Center in Orange.
Since then, her family has been seeking answers.
“Some days I come and I’m sure she’s paying attention, and other days it’s like talking to a wall,” her husband, Jose “Pepe” DeSoto said. “For all we know, she could be aware of everything going on and have no way to communicate it out.”
Three months after the Garden Grove couple celebrated their 10th anniversary, Denise DeSoto, rolled her minivan on a freeway. She was rushed to UCI, where doctors amputated her pinky and ring finger, and reattached her middle and index fingers on her left hand.
For about a week, she remained in the hospital and there were no problems, said Pepe DeSoto, an independent electrical contractor who splits his time between work and taking care of his two sons.
Though Denise DeSoto was a paralegal who often typed, losing two fingers didn’t bother her, said Pepe DeSoto, also 38, whose soft voice masks his strong will.
“She had a real good spirit about it,” he said. “She joked about [getting] 20% off manicures.”
While in the hospital and recuperating, Denise DeSoto would talk with friends and make lunch plans, he said. “She was perfectly fine,” he said.
Then on the morning of Dec. 13, she called her husband to tell him that she was having circulation problems in her reattached fingers and had to go into surgery. That was the last time she spoke to him.
On that day, Pepe DeSoto planned to take their two boys to school, go to work and then swing by the hospital in time for her recovery. Before he left the house, he called her one last time to reassure her that everything would be fine. But she had already been taken into surgery.
When he saw his wife 10 hours later, she was twitching and unresponsive, he said.
“I had no idea what was going on,” he said. “I still don’t know what happened. Obviously, we know the results.”
To find answers, the family filed a malpractice suit against the UC Regents.
But what happened during her recovery remains a mystery, the family’s attorney, Neil Bahan, said.
“We’re still looking for witnesses so we can record what really happened, and Pepe can have some closure in the case,” Bahan said.
A judge in April accused the UC Regents of hiding key evidence and witness testimony. Based on that finding, the family is asking for $15 million in damages. Lawyers for UCI would not return calls for comment.
Court documents containing witness testimony detail some of the events that occurred that evening. The documents say that Denise DeSoto was in recovery when she began to turn blue. A doctor pulled out a breathing tube only to find that it was blocked by a “mucous plug,” the records say. He removed it, but brain damage had occurred because of a lack of oxygen, the documents say.
Pepe DeSoto said he did not understand what had happened to his wife and had difficulty explaining to his children that their mother was seriously ill. He told his sons, now 10 and 12, that their mother was sleeping and wouldn’t be home for Christmas.
“I kept thinking she’d pop out of it,” Pepe DeSoto said. “I had my pager, expecting a call saying she was going to come out of it.”
The call never came.
The family spent that Christmas with Pepe DeSoto’s brother in Midway City. They tape-recorded the boys decorating the tree and played the recording over and over in the hospital room hoping to get a response from Denise DeSoto. But nothing moved her.
“The holidays still hit me real hard,” Pepe DeSoto said. “It’s weird because you think you would get used to something like this.”
For Christmas this past year, Neil, the 12-year-old, took his mother a sweater and some potpourri for her room at Meridian Neuro Care in Santa Ana. Pepe DeSoto has taken her flowers, clothes, new tennis shoes and a pillow from home.
A Christmas card picture of her in skydiving equipment with the inscription “Just dropping you a line” is pinned to a bulletin board in her room. Her blond hair has faded and she hardly resembles the woman in the snapshot. Two 8-by-11 pictures of her sons hang on either side.
Pepe DeSoto likes to rub her hands and lightly pinch her cheeks when he visits her. He calls to her in an effort to wake her.
“A lot of people ask, ‘Are you going to pull the plug?’ There is no plug,” he said. “We just pray a lot, and we’ll see what happens.”
Pepe DeSoto said he visits his wife as often as possible, but with his job, it can be inconsistent. Sometimes it’s every day for five days and then two weeks will go by without seeing her. He keeps occupied by coaching his sons’ soccer teams and researching articles about comas.
“It’s easier to stay busy than to sit and think,” he said. “Being too idle is difficult.”
Neil and Scott, the other son, visit their mother on special days--her birthday, Christmas and Mother’s Day. Sometimes, she is placed on a wheelchair and taken outside the nursing home where the children play.
“They think she may come home someday and be the same,” Pepe DeSoto said. “ ‘Coma’ is a big, big word. I don’t think they fully understand.”
Scott said he could not remember when his mother wasn’t in a coma, and Neil’s memory of his mother is fading. He said he remembers bowling with her, but not much else.
Bowling was a family tradition. The couple met at a bowling alley 14 years ago. Now, no one in the family bowls.