Mother Takes Action to Educate Others About Brachial Plexus Injury

Most people are probably not aware that they rely on the network of nerves known as the brachial plexus when they lift their arms to stretch or use their hands to operate a computer.

Many may also be surprised to learn that injuries to the brachial plexus, which can cause paralysis in the arm, occur in 1-3 out of every 1,000 births - making it as common as spina bifida and Down syndrome.

Kathleen Kennedy of Cedar Rapids, Iowa, knows these facts all too well. Her son, Keane, was born on April 28, 1997, with an injury to his brachial plexus, leaving him with a flaccid left arm. His injury occurred when his shoulders became stuck as he was moving through the birth canal.

Although the injury can be sustained as a result of a trauma, such as a motorcycle, car or snowmobile accident, it most often occurs at birth when the neck and shoulders are stretched too far apart, resulting in torn, broken or stretched nerves. In Keane's case, the nerves that control his deltoid, biceps and triceps muscles were ruptured. The vast majority of infants recover from the injury on their own; Keane is among the approximately 7-10 percent who face permanent paralysis if the injury is not treated with therapy and, in many cases, surgery.

Kennedy and her husband were frustrated by the information they initially received. "Basically, all we could do was take a wait-and-see approach. That seemed to be a philosophy from many of the physicians we went to," says Kennedy. "They even indicated that we were way too focused on this particular arm and that we needed to move on."

The Kennedys began to research options on their own and discovered, through another family dealing with the same injury, that a clinic in Texas could offer hope for recovering function in their son's arm. The Brachial Plexus Program at Texas Children's Hospital, established in 1987, had 735 visits last year, 264 of which were new patients. Like the Kennedys, the majority of families are from outside the state of Texas.

Dealing with a child's injury and preparing for a trip to a new environment can raise a host of questions and uncertainties among families. Clinic coordinator Lisa Davis not only educates the families about what they can expect and what the surgeries entail, but has done everything from picking up patients at the airport to taking groups of parents out to dinner the night before surgery.

"I just treat them like I would want to be treated if I had to do what they're doing," she says.

Davis also connects families with others who are going through the same experience. "I can answer all the medical questions, but I can't answer the parental questions about how they are feeling.

"They may be in a community where they've never seen anybody like this and they think they are alone. But they are not."

Keane first visited the clinic at nearly 6 months of age and the family has made the trip from Cedar Rapids every six months since that time for evaluation. In January of this year, Keane underwent a second surgery and his arm was then placed in a splint for a 12-week period - six weeks, 24-hours a day followed by six weeks at night only. At home in Iowa, Keane sees a pool therapist, an occupational therapist, a physical therapist and a hand therapist in addition to the range of motion therapy done at home three times a day.

"Right now, we are trying to get him to bring his hand to his mouth and that is challenging," says Kennedy. "We are trying to integrate his left arm and use two hands to do things or to touch things and that's a challenge, too.

"We are always using that arm and showing him that arm. We have since birth. It's a full-time job," she says.

Kennedy's efforts have not stopped there. As the lead contact for the Iowa Brachial Plexus/Erb's Palsy Informational Network, she has been working at both the state and federal government levels to increase awareness about the injury. In Iowa, Kennedy has been actively working with State Senator Kitty Rehberg and two bills are on the table for consideration as a result of their efforts. Bill 251 proposes a birth registry to document cases of obstetric brachial plexus palsy in Iowa. Bill 252 would establish an obstetrical brachial plexus palsy referral program at the University of Iowa hospitals and clinics to provide information about other facilities around the country that specialize in this area. Kennedy is also involved in a mass mailing project to family practitioners and pediatricians in the state of Iowa.

At the federal level, Kennedy hopes to schedule meetings with representatives from the Social Security Administration to address social security disability benefits for these children and with the Department of Health & Human Services to discuss the lack of awareness in the U.S. about brachial plexus injury and the lack of financial assistance for families.

Thanks to the Internet, many parent organizations and other groups are sharing information about brachial plexus injury through web sites. Davis says many patients coming to the Texas Children's clinic have found them through the Internet.

The members of the brachial plexus team at Texas Children's give lectures to both medical professionals and parents. In fact, Dr. John Laurent, a pediatric neurosurgeon on the brachial plexus team, Dr. Saleh Shenaq, a plastic and reconstructive surgeon on the brachial plexus team, and Davis flew to Iowa last June at the request of Kennedy for a question-and-answer session with approximately 25 families from around the Midwest.

"They (the group at Texas Children's) are exactly what they tell you they are - a team. They are such perfect examples of that," says Kennedy.

"I'm not happy he had this injury, but I'm thankful that we are able to address this injury and get function restored to his arm," she says. "He'll never have full function like the other arm, but as long as we can do everything we can to provide him with whatever function he can have, we certainly will."

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©2006 Texas Medical Center

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