Disabled boy's message: I'm the same on the inside

It was in kindergarten that Ben noticed other children treating him differently.They pointed at him in the hallway. Some laughed. His classmates shied away from including him.Ben didn't understand. To him, he was just like them, at least on the inside. He loves school, video games, telling jokes and Star Wars, and he aspires to be a film critic.The other kids would know that, Ben thought, if they could see past his disability. More Coverage Stories Disabled boy's message: I'm the same on the inside [12/23/07] Controversy over medical suit caps continues [12/23/07] So, the Warrenville boy did something about it. Ben and a social worker wrote a book, "Different on the Outside; the Same on the Inside," with his photos and unfolding story.It explains Ben has a normal mind, but his body won't cooperate. Signals from his brain get lost or misinterpreted on their way to his muscles.His teachers read the book each year to Ben's classmates, many of whom become his friends.In October, 12 strangers in a DuPage County courtroom also read Ben's book.The jury awarded $12 million to cover Ben's care for the rest of his life after finding that a doctor's negligence likely led to the brain damage the child suffered at birth, causing cerebral palsy.The panel's decision set a record in the historically conservative county. More importantly, his parents hope, it will help their gregarious middle child reach for his dream of having as normal of a life as possible, even when they are gone.They know their son has a tough road ahead of him, but as Ben first proved eight years ago today, he's a fighter.'Something's wrong'After trying to get pregnant for a year without success, Aaron and Sheli Hayes decided to adopt.The college sweethearts, who married in 1994, brought home their son, Caleb, in April 1999. He was 2 days old.Two weeks later, Sheli learned she was pregnant."We just laughed," she said. "We had no illusions we had any control over family planning."They describe it as a typical pregnancy -- as normal as possible with a few-months-old infant in the home.Late Dec. 22, 1999, as her contractions grew stronger, the couple went to Central DuPage Hospital in Winfield. By about 6 a.m., that next morning, her doctor instructed her to start pushing. She also was given a drug to induce labor.But hours later, after the mother's temperature rose and Ben's heart rate crashed to 60 from the once above-normal rate of 180, he was delivered through an emergency Caesarean section."I thought I was going to die," Sheli Hayes said. "It was the worst pain I ever felt."I don't know if we ever got a good explanation," she said. "We knew something's wrong but were never told there were any problems. I was never offered the choice of getting a C-section earlier. And then, all of a sudden, we were being rushed down the hall into an operating room."Ben, at 8 pounds, 6 ounces, was delivered at 9:38 a.m. -- 17 minutes after his heart rate plummeted.Both mother and son fought to survive. Sheli wasn't released from the hospital for nearly a week. She had intestinal problems, a dangerously low hemoglobin level, a torn uterus and a nicked bladder.Ben, initially without a pulse, was resuscitated, and remained hospitalized 14 days. He was on a respirator, unable to breathe on his own for the first week, and suffered seizures. Doctors were concerned about his heart, lungs, and kidneys, too.He was so sick that Aaron wasn't allowed to hold his son for a week. Sheli didn't get to until days later.Ben improved before his release from the hospital, but doctors still were concerned about his brain. A CAT scan showed a lack of blood flow."They just said Ben has a lot of work to do," said Aaron Hayes, a high school math teacher in West Chicago. "So, the plan was to wait and see."A diagnosisBen and his older brother, Caleb, were just 8#189; months apart. So the parents were well aware of where Ben should be, developmentally.But Ben was never typical. He couldn't breast-feed or grip his bottle. Ben couldn't roll over or hold his head up. Then, his parents noticed their newborn was blinking oddly.Sheli recalls: "We kept taking Ben in, and they kept saying, 'Well, he had a traumatic birth. Maybe he'll catch up. Keep watching.' "A few months after birth, a second CAT scan still didn't offer an explanation. Meanwhile, the parents became Internet sleuths, searching for any scrap of medical information that might provide answers. They also took Ben to specialists.Then, at 5 months, a pediatric neurologist diagnosed Ben with cerebral palsy.By that point the couple, still seeing the same family practitioner who oversaw Ben's birth, had grown suspicious about whether their son would have been fine if his delivery went smoother.Aaron Hayes contacted their original adoption attorney, who recommended Keith Hebeisen, a medical malpractice attorney whom the couple met in August 2000.Before deciding to pursue a legal case, Aaron and Sheli consulted with a counselor and their family. Aaron's father is a pastor; his mother is a hospice nurse."Our concern was for Ben," Sheli Hayes said. "We wanted to make sure we were doing it for the right reasons -- not for revenge or out of spite."A legal battle ensuesIn early 2001, the Hayes family sued Central DuPage Hospital; the obstetrician, John Messitt, who performed the surgery, and their family practitioner, Steven Armbrust, who practices in DuPage and Kane counties.Hebeisen negotiated a settlement with the hospital for $3 million and Messitt for another $1.6 million last year.But talks with Armbrust's insurer stalled, Hebeisen said, when the company wouldn't settle for more than $250,000, or a quarter of the doctor's policy.A trial began Sept. 24 in DuPage Circuit Judge Hollis L. Webster's courtroom. The jury, seven women and five men, promised to reach a verdict free of emotions, based on the law.Hebeisen argued Armbrust did not make it clear to the nurses the C-section needed to be done. If the doctor had better communicated the urgency, the attorney said, Ben would be fine today.The situation was worsened, Hebeisen argued, because the doctor kept telling Sheli to push even after the surgery was planned and he failed to take her off the labor-inducing drug when her contractions were already too close together.Each time she had a contraction, the baby's access to oxygen was restricted. All the time, Ben's head was wedged in her pelvis. With each push, his head rubbed against his mother's pelvic bone.Ben's heart rate spiked at 180 beats per minute then later plummeted to 60. The average range is 120 to 160. After it crashed, at 9:21 a.m., Ben was born in 17 minutes."It was clear if Ben had been delivered just one minute before the crash, he would not have had the brain damage," Hebeisen said. "It was just a matter of having Dr. Armbrust tell the nurse to make arrangements for an operating room more quickly, before an emergency arose."Armbrust, a 21-year doctor who has delivered hundreds of healthy babies, declined comment for this story through his lawyer.In the courtroom, his attorneys said Armbrust did everything he could for Ben. They noted Armbrust wasn't the surgeon. "Don't lay at his door the kind of judgment you've been asked to bring when he, in fact, did what a reasonable physician would do under similar circumstances," his attorney, Roger Littman, said."Dr. Armbrust advocated like the dickens from the start. He is the one who brought in the surgeon. So, if anybody needed to get Ben to surgery right away, it was Dr. Messitt. Dr. Armbrust did everything he could do, given the privileges he held and powers he was granted by the hospital staff."When it comes to the urgency, who is the one who really made things happen? Dr. Armbrust grabbed that cart, pushed it down the hall without knowing where he was going to the first available room. He's hollering, 'Put her to sleep now. Take the baby.' "A record verdictNear the close of the trial, Hebeisen had Sheli Hayes ask Ben some questions before the jury. He articulates his thoughts with the help of a computerized voice machine.For about five minutes, Ben told jurors his age, birthday, school and his hobbies. The jury also read Ben's book, the pages of which were displayed on a video screen."He's a happy kid," Hebeisen told jurors. "I mean, just think about that. Isn't it amazing that this kid is happy with how he's got to live and he's dealing with it? Think about that while you're deliberating on this case."The jury returned after six hours of deliberations Oct. 2, ending a seven-day trial.Members awarded $10.5 million for Ben's care and another $1.5 million for pain and suffering -- which was in-line with a plaintiff expert's lifetime estimate."Aaron and I were holding hands," Sheli Hayes said. "Afterward, I just hugged him really hard. For me, as a mom, it helped. It confirmed I did nothing wrong. I let myself a little off the hook."The jury included a cross section of people, all of whom agreed the doctor erred."Our main focus was to make sure (Ben) has the resources he needs to be taken care of for the rest of his life," said juror Mary Krajcir, of Wheaton, a mother of four and substitute teacher. "It was so tragic."The defense will appeal the jury verdict. Also, the doctor's insurance was capped at $1 million but, because the company refused to settle for more than $250,000, Hebeisen argues, it should be on the hook for the entire verdict award. If not, Dr. Armbrust is liable.That question likely won't be settled for years to come. In the meantime, the Hayeses have the $4.6 million from their earlier settlement with the hospital and surgeon to help fund Ben's care.A hope fulfilledBen turns 8 today. He is a second-grader at Johnson Elementary School in Warrenville, where he is enrolled in regular classes.He has friends and roughhouses with his two brothers, Caleb, and 2-year-old Elijah.Ben also attends DuPage Easter Seals in Villa Park twice a week for physical, speech, occupational and assisted technology therapy. He is making strides. He stands for up to one hour a day to build bone mass, to keep his body ready should one day a cure be found.He can give out kisses, when he chooses, and also is initiating more conversation these days, rather than just responding to questions. He can't form words, other than "no," on his own. So, Ben relies on a high-tech communication device with computerized voice that helps him share his feelings. The earlier settlement also allowed the Hayeses to hire two personal assistants --students from Aaron's high school -- to help Ben with his homework or to exercise or accompany him on outings. Ben has a lot of good days. He is often smiling. But, about every six months or so, his parents said he cries, mostly out of frustration. At just 3, Ben became curious. Will my brain always be broken, he wondered. Will I always be in a wheelchair? Hard questions, for any parent. They try to comfort him, while still being honest.Ben is only 51 pounds but, as he grows, it'll be increasingly difficult for the family to take care of him alone. They never want Ben to end up in some facility.Their goal is to give him as normal and as best of a life as possible. Aaron said the jury award will help fulfill that hope. Normalcy. That's what Ben wants, as his book to his first-grade classmates reads:"Ben really wants people to know that he may look a little different on the outside but, on the inside, he has the same feelings as any other boy."He gets very sad when other people don't take the time to get to know him and just point at him, not listen to him, or laugh at him. So, just be patient and Ben will be a good friend and classmate." 512413Aaron Hayes attaches braces to Ben's legs as the father helps his son do some walking exercises while assistant Lindsey Johnson, 16, helps. Ben suffers from cerebral palsy that affects his ability to control his muscles.Bev Horne | Staff Photographer 512412Ben at home with his mother, Sheli Hayes, in Warrenville.Bev Horne | Staff Photographer 387512Ben Hayes at one of his recent therapy sessions at DuPage Easter Seals in Villa Park. Here, Anna Murray, an occupational therapist, helps the Warrenville boy strengthen his muscles.Bev Horne | Staff Photographer 512306Benjamin Hayes, days old, fighting to live at Central DuPage Hospital in Winfield.Photo Courtesy of Hayes Family