Resources for Families with infants born with birth defects or hearing loss

Bringing a child into the world is a moment of profound joy and anticipation for families. However, when a child is born with a birth defect, the journey becomes more complex, layered with medical concerns, emotional challenges, and the need for specialized care. Public health nurses play a pivotal role in guiding families through this difficult terrain, providing not only clinical expertise but also empathy, advocacy, and long-term support.

Minnesota has been connecting families with babies who have birth defects to support programs since 2005 through Minnesota's Birth Defects Information System (BDIS) run by the Minnesota Department of Health (MDH). The primary goals of this monitoring program are to monitor trends of birth defects to detect emerging health concerns and identify affected populations, assure appropriate services are provided to families, prevent birth defects through targeted education, educate physicians and the public about birth defects and stimulate research on risk factors, treatment, prevention and the cure of birth defects. Each year, over 2,000 infants are born with serious birth defects and through BDIS, information for around 60 different conditions is collected. Additionally, about 150 babies are born each year with hearing loss. 

The Children and Youth with Special Health Needs (CYSHN) staff work together with local public health agencies to champion the health and well-being of people living in Minnesota with special health needs and disabilities from the earliest stages of life through transition to adulthood. After you give birth, MDH is alerted by your provider that your baby was born with a birth defect. From there, MDH will contact Health and Human Services of Faribault & Martin Counties Maternal Child Health program to reach out to the family and offer support and referrals to services that support the family in raising a child with a birth defect. This is a FREE program that was created to connect you and your children with resources to help your family. 

Once our agency receives the referral, a Public Health nurse will be assigned to your family. One of those nurses, Becca Sokoloski, is trained in working with families experiencing birth defects or hearing loss. Becca's first step is to reach out to your family to set up a time to meet and discuss programs and resources based on your child's specific needs. Becca takes the time to listen so she can understand the specific needs - medical, emotional, financial or social - that your family has. She is able to connect families to services from across Health and Human Services, as well as support programs available within our community. This includes connecting families to resources such as physical, occupational or speech therapy, programs that regularly monitor child development, medical and nutritional support services, educational resources, services that offer assistive devices or adaptive technology, early childhood programs and other community and social services programs.