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Near drowning leads to advocacy

At 5 years old Preston de Ibern was a happy, outgoing, precocious child. He loved to dress himself in his construction worker's outfit: boots, jeans, checkered shirt and yellow hard hat. He talked about growing up and one day owning a construction company.

Today, at 6{, his laughter has been silenced and his dreams for the future have subsided. He can neither talk, walk, feed nor dress himself. Chances are, he will never see adulthood.

Preston is a victim of a near drowning, and his life and that of his family have been radically altered.

"We were one of the lucky ones," said his mother, Carole de Ibern of Palm Harbor. "He survived. Ninety-five percent who are involved in drowning accidents don't make it. We will never have the same child, although we love him with all our hearts."

Mrs. de Ibern is reaching out to others with a newsletter dedicated to the families of children who have nearly drowned. She recently published the first quarterly edition of the Parent to Parent Connection and is distributing it free to any hospital, school, doctor's office, health organization or household that requests it, as well as to more than 150 children's hospitals across the country.

The newsletter contains medical news, stories of the children, inspirational messages and classified ads for therapy equipment, toys and wheelchairs.

"As far as I know, this is the only newsletter like this in the country," Mrs. de Ibern said.

She also is setting up an e-mail address. And she plans to lobby for more stringent safety requirements and mandatory safety equipment, such as pool alarms and fencing, when new pools are installed.

There is a reason Mrs. de Ibern is making such plans.

"I have always believed there is good in all things," she said. "But I can find no good in his accident.

"The only thing I can try to do," she said, "is get the message out that this can happen to anyone and we must do whatever is necessary to prevent it. If I can save one other child, one other family from experiencing the dramatic changes we're going through, then we will feel that something good can come from his accident."

Swimming pools present a deceptive picture, Mrs. de Ibern said.

"We perceive swimming pools as relaxation, not as something dangerous," she said. "Yet they are more dangerous than a loaded gun, because they are silent killers. They attract kids, then quietly steal them away from us. There are many safety devices available. Pool owners must purchase and use them."

Preston's fateful accident happened on a sultry July evening in 1995. The family was attending a barbecue held at a friend's pool home. Preston donned a life jacket as he, his older brother, Josh, and several other children played in the pool.

The de Iberns were the last family to leave the party. As their visit was ending and the children were changing their clothes, Preston decided to return a toy to the toy box near the pool without anyone's knowledge.

Because he had a large bump on his forehead, his parents and doctors believe he slipped, bumped his head and rolled into the pool. They estimate he remained under water for three to five minutes.

Preston was flown to Bayfront Medical Center and transferred to All Children's Hospital, but the medical intervention was too late to save his lungs and brain from permanent damage.

Now he is profoundly handicapped, needing daily medications to control reflux, spasticity, seizures and drooling. He has had several bouts of pneumonia since the accident and is susceptible to viral infections. Currently, he is battling pink eye, thrush and tonsillitis. It is difficult for the family to take him out because he often gets ill when exposed to others in confined places.

The expenses to care for children like Preston are tremendous for both families and the insurance companies. He has an entourage of health and educational professionals that visit him every week: a Hospice nurse and social worker (he is eligible because his life expectancy is limited to childhood), a physical therapist and a homebound teacher.

He requires numerous types of therapeutic equipment that can be expensive. His wheelchair costs $4,000.

Preston's family had to purchase a special van with a wheelchair lift. Insurance has picked up most of the costs, but Mrs. de Ibern said the family has spent thousands of dollars for his special needs.

Mrs. de Ibern quit her full-time job to stay home with Preston and give him daily physical therapy, stretching and moving every muscle in his body several times a day. Because he has difficulty swallowing, he must be suctioned when necessary. She feeds him through a gastrointestinal tube.

Although Preston, who weighs 54 pounds, usually sits in his wheelchair, his mother often picks him up and cradles him on her lap. She sings to him, talks to him, plays with him and prays with him.

"He understands most of what I say," she said. "I talk to him like a normal child."

She says although the daily activities can be grueling at times, she doesn't mind.

"God gave me the privilege of giving him birth, and with that he gave me the responsibility of loving him and taking care of him no matter what," she said. "We don't want any pity. We have accepted our life and love each other the way we are.

"This isn't a perfect world," she adds. "You don't have to be perfect to be loved."

As she bounced Preston on her lap and whispered in his ear, a smile came over his face. His eyes, sometimes distant, appeared to focus.

"We must all learn to love our kids and make time for them today," Mrs. de Ibern said, "because we don't know if they're going to be here tomorrow."

Safety tips

"Drowning is the leading cause of death for children ages 1 to 5 in Florida," said Kathy Varga, coordinator of the Suncoast SAFE KIDS Coalition, an organization sponsored by All Children's Hospital.

The typical drowning victim is a 3-year-old boy who drowns in the backyard pool between 3 and 6 p.m. with both parents home, she said.

The organization has provided the following guidelines to minimize the risk of drowning:

+ Completely enclose all pools with a four-sided fence that is at least 4 feet high. This includes the pools of grandparents, friends and sitters.

+ Use self-latching fence locks that are out of the child's reach.

+ Install separate locks at least 5 feet above the floor on all doors leading to the water.

+ Never leave a child unsupervised around water.

+ Designate a lifeguard at all social functions.

+ Do not allow push and pull toys, balls or tricycles in the pool area.

+ Take swimming lessons and water safety classes.

+ Know how to swim and perform CPR.

+ Keep a cordless phone at poolside.

+ Remove steps from above-ground pools when not in use.

_ For information about the newsletter, call Tampa Children's Hospital at St. Joseph's Hospital, 870-KIDS (5437).