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Moms, Dads Start Teaching Doctors

September 27, 1998

SWANTON, Vt. (AP) _ On a recent evening Tracey and Steven Wagner’s home bustled with happy children.

The Wagners’ children range in age from 17 down to 18 months and they have a 9-month-old foster child. And then there were the neighborhood kids who moved in and out of the two-story farmhouse as though they lived there.

With steaks and chicken on the grill, Joe Pullara, a 35-year-old third-year medical student at the University of Vermont, pulled into the driveway. He had been invited for dinner.

He didn’t know that the Wagners’ youngest child, Sofia, suffers from hypoplastic left heart syndrome, a condition in which the heart is missing a chamber. She has undergone a number of operations that will in theory correct the problem, but the procedure is so new that the oldest child living with the condition is 11. Sofia’s future is uncertain.

``The first time she smiled was two days after open-heart surgery,″ Tracey Wagner told Pullara after they visited for an hour or so. During the discussion Pullara learned how Sofia’s condition affected her family.

That was the point. In an age when medicine is becoming increasingly high tech and impersonal, Pullara was reminded that ultimately medicine isn’t about magnetic resonance images, organ transplants or microsurgery.

``As a medical student you hear about these children and see them in the hospital. You don’t see 99 percent of the other time when they are happy and their families are enjoying them,″ Pullara said after the visit.

Pullara was in Swanton as part of the Medical Education Project, a project developed cooperatively by the Winooski-based nonprofit organization Parent to Parent, the UVM medical school and area pediatricians.

This year the program is expanding to include all incoming pediatric residents. They are assigned to families when they arrive and they will work together during the physicians’ three years of post-graduate medical training.

The impetus for it all came from Parent to Parent, a group founded in 1984 to help parents of children with special needs find the support they need from other parents and the medical community. It has expanded to providing services to help parents of children with conditions ranging from Down syndrome to cystic fibrosis.

The organization has also developed a national reputation for helping the medical community focus on a concept that has become known as ``family centered care,″ with families and health care providers working together.

``They serve as the maitre d’ to understanding family centered care,″ Dr. Lewis First, the chief of pediatrics at the UVM medical school and at Fletcher Allen Health Care, said of Parent to Parent.

Parent to Parent gives physicians the families’ perspective on how to best care for their children. And it means encouraging the parent _ and the child _ to actively participate and plan the health care.

``We believe every family has strengths and their own beliefs. You need to get into that family in order to be their partner in caring for their child,″ said Parent to Parent director Nancy DiVenere.

Above all, the goal of the Medical Education Project and the new residency program is to train better doctors. And that will help parents and medical professionals who must deal with children with special needs.

``Parent to Parent in Vermont is one of the premier organizations (of its kind) in the country,″ said Dr. William Schwab, a family practitioner, faculty member of the University of Wisconsin medical school in Madison and parent of a child with special needs.

Many states, including Wisconsin, have used the Parent to Parent model to create similar programs, Schwab said.

Parent to Parent has helped bridge the chasm that in some cases had sprung up between bewildered parents and condescending health care professionals.

``There is a close and respectful relationship between Parent to Parent and the (local medical community). This is not an organization that sees doctors as the enemy. The really see themselves as colleagues. That makes pediatric care better in the state of Vermont,″ Schwab said.

The relationship is so close that DiVenere is an adjunct faculty member at the medical school. The Robert Wood Johnson Foundation, a major funder of community health projects, gave a $100,000 grant last June to Parent to Parent and DiVinere.

The Medical Education Program is more than just a home visit. Seminars conducted by Parent to Parent program director Jo Yoder asks medical students to put themselves in the shoes of a parent of a child who has one of four conditions.

They must wrestle with choices demanded of parents of children with Down syndrome, spina bifida, third-degree burns on the face or cystic fibrosis. ``What comes out are their own values and their own beliefs,″ DiVenere said. ``No matter how homogenous the group is, what they are expressing are their own personal beliefs.″

And the whole concept isn’t just about sick children. First said the young physicians often volunteer to work in the community and meet children who aren’t sick or meet sick children in other settings. A group of residents this summer worked as counselors _ not as health professionals _ at a camp for children with cancer.

``It’s like the late 1800s, the docs would go in and if they couldn’t do anything medically they would sit there and hold their hands,″ said Dr. Kellen Glindner, 27, who just started a pediatric residency. ``That’s being forgotten.″

Where does it go from here?

``It’s kind of a work in progress,″ said Dr. Brad Friesen, another first-year resident. He recently met for the first time the family he will be working with.

``I think it’s just going to turn into a relationship. There is nothing cemented in,″ Friesen said. ``That gives us a lot of flexibility.″

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