Utah Birth Defect Newtork
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Striving to Prevent Birth Defects
Defect Information Defect Information Prevention Services Providers and Members About UBDN

Services

State Agencies The Utah Birth Defect Network will provide information about specific birth defects to families and health care providers. Referrals for medical and financial information are available.

Specific services for families of affected children from birth to three years of age are provided by the Utah Early Intervention Program, located within the Bureau of Children with Special Health Care Needs, Utah Department of Health. Services include child health assessment, service coordination among providers, programs and agencies, occupational and physical therapy, speech and language therapy. Information on these services is available at http://www.utahbabywatch.org

A further resource is the Utah Collaborative Medical Home, which is a project designed to provide information, tools and resources for Primary Care Physicians to enhance their ability to care for children with special health care needs. Information on the Utah Collaborative Medical Home is available at their web site: http://www.medhomeportal.org

Bereavement Support
Another important focus is support for families who have experienced the death of an infant. Organizations that offer resources and support to families who have experienced the death of an infant include:

SHARE Pregnancy and Infant Loss Support, Inc. www.nationalshareoffice.com

SHARE Pregnancy and Infant Loss Support provides support towards positive resolution of grief experienced by a family following the death of a newborn baby. Their local chapter in Utah has meetings in Salt Lake, Davis, and Toole counties on a regular basis.

The Compassionate Friends, Inc. www.compassionatefriends.org

The Compassionate Friends is a national nonprofit organization that seeks to help families positively resolve their grief following the death of a child of any age and provides information to help others be supportive. The local Salt Lake Chapter holds weekly meetings in Salt Lake City and Ogden (see More Information below)

Bereaved Parents of the USA www.bereavedparentsusa.org

Bereaved Parents of the USA offers support, understanding, encouragement and hope to other bereaved parents, siblings and grandparents after the death of their child, brother, sister, or grandchildren. Each web site has an extensive list of suggested readings for families.
Additional support and information is offered by the Utah Early Intervention Program and the Utah Collaborative Medical Home. For more information about these programs, see the links above under State Agencies.

National
The National Birth Defects Prevention Network (NBDPN) is a non-profit organization involving birth defect programs and individuals working at the local, state and national level to raise awareness for birth defects. The NBDPN is committed to the progression of surveillance and research, to identify factors for prevention and assist families to minimize secondary disabilities prevention. www.nbdpn.org

The American Academy of Pediatrics has outlined specific recommendations for Down syndrome children. These recommendations cover several time periods from birth to 21 years and older. Details are available on the American Academy of Pediatric web site: www.aap.org

Additional support and information is offered by the Utah Early Intervention Program and the Utah Collaborative Medical Home. For more information about these programs, see the links above under State Agencies.