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A medical home away from home

New Ulm resident Marion Aiken didn’t ask for her beloved daughter Amanda to be born with special health care needs.

But 12 years ago when Amanda was born at only 31 weeks gestation due to a fetal maternal hemorrhage – the infant had lost almost all of her blood through her umbilical cord, which had failed to securely attach to the placenta – she had a myriad of health concerns.

All of her major organs had shut down and her lungs were beginning to crystallize. She had an actual birth weight of 2 pounds, 5 ounces and was immediately put on a respirator.

“You feel so helpless,” Marion said. “You hope and pray that they are healthy and have 10 fingers and 10 toes and it doesn’t happen and you say, ‘Oh boy, what are we going to do?’ ”

Thanks to top-notch health care from doctors at Abbot Northwestern and Children’s hospitals in the Twin Cities, Amanda survived. With ongoing care at Gillette’s Children’s Hospital and New Ulm Medical Center for cerebral palsy, pervasive developmental disorders, cognitive delays, asthma and other problems, she is thriving today.

But the years have been a roller coaster ride for Marion and her husband, John.

Many times, those bumps came in the form of frustrations caused by a lack of communication between multiple health care providers in different communities, difficulties coordinating care for her daughter and spending time explaining Amanda’s condition over and over again to each new physician.

Lately, however, the Aikens’ ride has smoothed out significantly.

A program, undertaken by New Ulm Medical Center pediatrician Dr. Clifford Wu, is helping hundreds of parents whose children have special health care needs experience continuity in their health care that has been lacking.

The Medical Home Initiative, sponsored by the Minnesota Department of Health and the Minnesota Chapter of the American Academy of Pediatrics, aims to bring together ideas from a contingent of 11 medical facilities state-wide in a collaborative effort to provide patients with a medical “home” no matter where they receive health care.

“It’s the idea that every child deserves a medical home,” Wu said. “It’s a conceptual place where a child can receive comprehensive, coordinated and compassionate care. But it’s not just the child; it’s the child’s family that is impacted. The emphasis of the program is on children with special health care needs -- those with genetic defects, chronic illnesses, heart problems, diabetes, arthritis and even asthma.”

Some of the aspects of the multi-faceted initiative include the creation of emergency care plans for the approximately 200 children with special health care needs seen at the medical center; development of a communication system that gives out-of-town specialists a device to immediately communicate changes in a child’s care to Dr. Wu; assistance for parents to coordinate appointments, both locally and far away; and priority access to Dr. Wu at set times throughout the day.

“What the medical home means for us as a family, is a coordination of care,” said Aiken, who belongs to the medical center’s medical home initiative committee along with Wu, fellow parent Clair Gieseke and Cindy Wellner, clinic LPN.

“It is giving my daughter and our family support in the medical arena where has always been a gap. Dr. Wu has given us the opportunity to do more at home in New Ulm and we have the continuity now.”

That continuity is epitomized by en experience Amanda had in May. She was being seen by one of her many doctors at Gillette Children’s Hospital in St. Paul for a problem in the area of her spinal column. That doctor asked the Aikens if Amanda had ever had a CT scan. Aiken said she had one performed recently and, in fact, had a copy of the report and images on a CD-Rom, which was created by medical center staff expressly for the Aikens and filled with fundamental information from Amanda’s medical record.

“That doctor was able to sit and look at the image and said it was just awesome; he was blown away.” Marion said. “He knew the results then and there, didn’t have to order another CT scan for Amanda and we knew the next course of action without it taking days.

“Not only did she avoid duplicate procedures and tests, but we got our answers immediately. It’s the worst feeling, waiting for days for doctors to look at the test results and tell us what we need to do, because you don’t know how your life will have changed by then. I can’t even put into words how excited I am about this, how well it’s working out. It’s like Christmas, you keep discovering new things to get excited about.”

The Aikens aren’t the only ones excited about the program.

The medical center was recently chosen as a Minnesota representative to the National Initiative for Children’s Healthcare Quality, which is a division of the Institute for Health Care Improvement.

“To be able to go national and do this thing, to me it means not only are we going to give medical homes to children locally, but the whole United States is going to learn from us and be a part of this,” Marion said. “Only 11 pediatricians in the entire state took on this ambiguous program – and New Ulm was one of them! I’m not saying it’s easy; there’s a lot of hard work involved, but for us to be chosen as national representatives says great thins about Dr. Wu and the committee’s commitment.”

In March, the team attended the first meeting of the national contingent in Dallas. In June, the national delegation will hold an Internet meeting and in October the medical center committee hopes to travel to Washington D.C. for a third meeting.

Wu said he believes the medical center was chosen for the national honor based partly on the medical center’s staff ability to successfully integrate the different aspects of the medical home.

“We have borrowed ideas from other systems because it very much is a state-wide initiative,” Wu said. “It’s really supposed to be a sharing back and forth. When something works in one facility, it might also work in another.”

Wu added that the medical center’s administration also bolstered the team’s ability to implement changes.

“Administration basically said do what you think is necessary and if you need something let us know,” We said. “They’ve not really said they want things done in a certain way and I know that other Minnesota facilities have not had that type of support. Making changes is always easier when people have similar agendas.”

Wu said after the medical center completes its switchover to automated medical records later this year, the medical home initiative will grow even more. It’s now limited to pediatric and emergency personnel.

“One of the challenges we face is to implement the concept facility wide,” Wu said. “Right now we are in a huge transition phase: when the construction project ends all physicians and nurses will have work space to put this together and when the electronic medical record is in place that will really help the flow of information. I think once everyone is up to speed, we’ll try to spread the concept to other patient groups.”

Medical Home Initiative at the New Ulm Medical Center involves:

• 1. Coordination of appointments. Facilitated by the medical center’s patient information center, parents of children with special medical needs can call the PIC and ask them to coordinate appointments for the same day either at the medical center or clinics far away.
• 2. Emergency Medical Record. Made possible by Dr. Dale Bohlke, medical director of the emergency department, a CD-Rom that summarizes the history, treatment and other pertinent information is created for the medical center’s special needs children and kept on file in the ER, as well as given to parents. This easy-access file removes the burden of parents having to re-tell their children’s stories each time they visit the ER.
• 3. Fax Back forms. Distributed by parents to their children’s non-local specialists, the fax forms gives doctors an immediate method of communicating changes in treatments to Dr. Wu. This eliminates the often lengthy delays in exchanging information and keeps everyone in the child’s medical family as up to date as possible.
• 4. Q Periods. Offered by Dr. Wu as a way to provide children with complex medical needs nearly immediate access to a pediatrician. Several 20 - 40 minute slots are reserved for these children throughout the day.

New Ulm Medical Center
1324 Fifth St. N.
New Ulm, MN 56073
507-233-1000
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