By Jacqueline Seibel
Milwaukee Journal Sentinel (Wisconsin)
Copyright 2007 Journal Sentinel Inc.
Anne Juhlmann did what any mother would do when her child needed medical help. She called 911.
The Waukesha woman expected that the paramedics who showed up at her door would know of the medical equipment that her son, Sam, needed and would know that her son should be transported to Children’s Hospital of Wisconsin in Wauwatosa.
Neither proved to be true and Sam, 7, died that day, losing his battle with mitochondrial disease.
Juhlmann didn’t blame the people who tried to save her son, but in the belief that policies needed to be improved, she set out to make sure things would be different if there were an emergency for her other son, 14, who also has special needs.
She met with the Waukesha Fire Department after Sam’s death to develop a plan and to ask the department to change its policy to only transfer patients to Waukesha Memorial Hospital.
“The Fire Department was so open to looking at the situation, to learn from it,” Juhlmann said.
Waukesha Fire Deputy Chief Jesse Alba remembers Sam’s case vividly. He knew the family before Sam’s death.
“I’m a friend of the Juhlmanns, and I felt terrible about their loss and it was my organization that treated Sam,” Alba said.
Although the paramedics who took care of Sam that day almost two years ago followed department policies, the department wanted to learn from the situation, he said. The department has since changed its policy. Now if the child is stable and if the department can spare one of its ambulances for the longer trip, they can take that child directly to the Wauwatosa hospital.
Juhlmann and Alba aren’t stopping there. They both sit on a committee that includes the Oconomowoc Junior Woman’s Club that is establishing a database identifying children with unique needs in the event of an emergency or disaster. The database is intended to equip medical care workers entering an emergency situation with knowledge of children’s needs, said Kia LaBracke, the club’s co-chairman.
The committee is in its infant stages but hopes to first identify all children with advanced technological needs, such as feeding tubes, or an IV, starting with those released from Children’s Hospital, LaBracke said.
LaBracke said starting the database with a small population helps the committee narrow its focus and complete the project instead of trying to take on all children and adults.
Part of the mission of the Oconomowoc Junior Woman’s Club is to better the lives of children. Due to the perseverance of the club in the last two years, every ambulance in Waukesha County is equipped with a pediatric bag - a first responder’s kit to handle emergencies involving children, Alba said.
Earning honors
The club received a 2006 National Heroes Award from the Emergency Medical Services for Children Program and also last year took home a second-place award in Community Improvement from the General Federation of Women’s Clubs.
Headed by LaBracke and co-chairwoman Elizabeth Davy, the club raised and donated more than $65,000, including a $24,000 grant, to purchase the pediatric bags within two years for Waukesha County.
Davy is now heading an effort to spread the pediatric bag project across Wisconsin.
LaBracke leads the special-needs database project, something she learned about when she traveled to Maryland last year to accept the club’s national award. At the conference, she met Children’s Hospital emergency room physician Halim Hennes, who had wanted to start a database for some time.
Hennes called the project a “global, comprehensive approach.”
“You want to make sure it’s safe, has the information that is relevant to the people who come to help, that the parents are on board, and the local EMS departments are on board,” Hennes said. He has been lobbying the state for funding for the database, which he said also must ensure privacy. While the club committee is waiting to hear if they will receive state funds, they are encouraging all parents of children with unique needs to check the protocols of their local EMS department, introduce themselves to the department and outline their needs.
One of the roadblocks to this project is convincing parents that an emergency can happen, Juhlmann said. Parents of children with special needs are well versed in their child’s care and sometimes don’t think that something could go wrong.
“Everyone needs to know in the end that nothing better could have been done. When you have a plan in place you are ensuring that,” Juhlmann said.