For a family living in Yellowstone County, with all of its medical expertise, having a child with a birth defect is challenging enough.
For a family living in one of Montana or Northern Wyoming's more rural counties, the problem is compounded by distance.
That situation has been described by one area doctor as "a crime of the heart." But, for parents of special-needs children, relief may is on the way.
The March of Dimes recently awarded the Fetal Diagnostic and Imaging Center of Billings with a national three-year funding grant that will improve access to specialized care for rural children.
Winning one of the grants isn't easy, said March of Dimes program services director Kathy Dignen.
The project is a dream for Dr. David N. Jackson, director of maternal fetal medicine at St. Vincent Healthcare and director of the FDC. Specializing in perinatology for more than 11 years, Jackson has seen his share of children born with major congenital anomalies or disabilities. Prior to 1999 Jackson practiced in Oregon, where specialized care was much more accessible. Upon arriving in Montana, the doctor saw a disturbing trend in care for many of his patients.
As the fourth-largest state geographically, Montana poses many unique challenges for those requiring the expertise of a specialist. Vast distances, high gas prices, and severe weather can limit a patient's ability to receive initial consultation and keep them from ongoing services.
Many types of medical specialists are in high demand in rural Montana, especially for people with disabilities. Montana has 56 counties, of which 53 are considered rural and 41 are designated health professional shortage areas. The Montana Hospital Research and Education Foundation reports a 20 percent annual turnover in rural physicians, an additional challenge for those needing continual care.
The project emerged from what Jackson describes as a heartfelt need in care. The doctor recalls a time he was lecturing at a parent's meeting on fetal development. A mother approached him with the story of her five-year-old child born with a genetic defect. At birth, the child was missing an arm and a leg and was later fitted with artificial limbs.
Because the family lived in a rural area, the child had never received a genetic consult. The mother expressed her apprehensions of having more children for fear of a genetic defect that would repeat itself.Putting a mother at ease Jackson conducted a simple examination of the child and within five minutes had put the mother's fears to rest.
"The child had a condition known as amniotic band sequence that was the result of a membrane accident in utero and had nothing to do with genetics," he said. "This child was five years old and the parents still had no answer as to why. It took five minutes to diagnose the problem."
"We are working to decrease the time it takes to get answers for these parents," he said.
The FDC services a 500-mile radius, including northern Wyoming, and is often faced with the challenge of funneling rural families to specialists for care.
"It is painful to talk to families who have had to wait for sometimes months before they can consult with a specialist for their child," Jackson said. "I am acutely aware of the difficulty many people face in obtaining a certain level of service for their child with congenital defects."
Jackson describes his position as unique in that he serves as a pediatrician to a child before the child is born. He has seen firsthand the difference in the lives of families who are able to access high quality genetic and developmental services. And, he adds, the sooner they are able to do so, the greater the reduction of stress on a family.
"It is well-documented that families with a child who has special care needs have a difficult level of stress," Jackson said. "Their complicated situation brings a greater rise in issues like divorce and alcoholism."
Though simple in its concept, the program brings together many agencies and structures currently not linked for this purpose. The FDC serves as a coordinating center for all services of the program and as the site of initial exam. The center then utilizes the technology of specialized interactive television video units capable of zooming in on details as small as a skin pore.
Specialists across the state are then linked to the center via an existing high-speed telemedicine network and are able to conduct patient exams with nearly the same precision as if the patient were physically present. Diagnosis and ongoing treatment is then facilitated through the program.
Through researching cases across the state, the FDC team anticipates more than 300 consult requests, mostly pediatric, in the first year. Already letters of support and patient interest is high with many potential consults lining up, according to Aimee Alvord, PA-C at the center and clinical coordinator for the project. Leslie Aptekar, certified genetic counselor and Mathew Aptekar, network administrator, joins Jackson and Alvord on the project team.
Currently the center is finalizing marketing materials including information packets for health care providers across the state and the designing of a Website, "http://www.fetal3d.com" for patient and provider information. They anticipate servicing their first consults by the end of March.
Though the FDC serves as the hub for the telegenetics project, the center is currently partnered with more than 20 other telecommunication sites throughout Montana with the potential to connect with 20 more sites, a task requiring only technology upgrades in equipment.
Though the project appears daunting, the team at the FDC is driven by a vision of both human compassion and medical potential.
Jackson envisions the program as a pilot project with the potential to interact with specialists on a national and international level.Looking beyond the barriers A proponent of cutting-edge technology, Jackson sees beyond the traditional barriers of technology and humanity.
"On the surface it appears to be about science and technology," he said. "This is powerful information for parents to heal, to reduce stress. They need to answer questions that lead to feelings of isolation and guilt and understand why their child was affected."
"Our biggest passion is that children are not isolated by their illness and the miles between their care."
Looking down the road, the FDC hopes the impact of the program will be felt for decades. Many families with special care children are often so overwhelmed they eventually give their children up to state care. Early intervention may be the key to keeping families together and stresses down.
Alvord echoes many of Jackson's sentiments.
"This is overwhelming but exciting. We will be able to give some of the greatest quality of care and provide that next step for these families."