North Dakota’s only clinical geneticist travels throughout the state to help prospective and expecting parents understand what to expect when children are born with birth defects or genetic disorders.

John Martsolf, director of medical genetics and professor of pediatrics at the School of Medicine and Health Sciences, counsels parents whose children have been diagnosed with defects or who are at high risk for having a child with a birth defect.

The most common birth defects include Down Syndrome and Fetal Alcohol Syndrome, along with other genetic abnormalities.  Parents and patients are referred to the counseling service, with clinics in Bismarck, Minot, Fargo, and Grand Forks.  Most people, Martsolf notes, live within 100 miles of these cities.

Patients receive information about a diagnosis they have received, learn about the risks involved, and find out how the defect occurred.   

“Answering why the defect happened is hard,” Martsolf explains.  “I can talk about how it happened.”

Martsolf also counsels adult patients with birth defects and people who are older than average, so they understand the risks involved if they decide to have children.

“I give people a chance to sit and talk about what they can expect.”

After the counseling session, he stays in contact with the patients and their primary care physicians, so they receive the best possible treatment and management if a child is born with a birth defect.   

North Dakota’s Genetic and Birth Defects Evaluation and Counseling Service was founded in 1978 by Martsolf and then State Health Officer Dr. Robert Wentz through a collaboration of the State Health Department and the School of Medicine and Health Sciences. 

When parents first learn that their child has a disability or special health care needs, it can be hard to know where to turn.  Talking with someone who has “been there” can make a tremendous difference. 

The North Dakota Family to Family Network, located in the Center for Rural Health at the School of Medicine and Health Sciences, is a statewide support network based on the philosophy that parents who have successfully adapted to their children’s disabilities or special health care needs are the best support for other parents of children in similar situations.

“A professional has read about it in a book,” said Missi Baranko, a volunteer and regional coordinator with the program in Dickinson.  “But for a parent, it’s in their heart.  They have lived it.” 

The program serves families of children ages birth to 21 years with all types of disabilities and special health care needs, with particular attention to families in rural environments.

One of the free and confidential services provided by the program is matching experienced parents of children who have special health care needs (disability or chronic health condition) with other parents facing similar concerns.  They provide emotional support and understanding, shared experiences, and help in accessing resources.

“When you first receive a diagnosis and a doctor or other professional starts explaining all of the resources available to you and how to apply for them, it can be overwhelming and hard to understand,” said Baranko.  “Many of the families we work with were ready to give up and not bother applying before they talked with someone who has gone through the process.” 

There is more to providing support than just learning about the disease, disability, or support systems.  The connection gives people an opportunity to discuss other issues involving siblings, strains on a marriage, financial burdens, and more.

Since it began in 1997, the Family to Family Network has referred over 250 families to more than 200 trained veteran parents.  The Network can be reached toll free at 888-434-7436 or via e-mail at NDF2F@medicine.nodak.edu.