Frequently Asked Questions (FAQs)

How often do birth defects occur?

It is estimated that each year, over 2,000 babies in Minnesota and an estimated 150,000 babies nationwide are born with serious birth defects. Birth defects are the leading cause of death in children less than one year of age causing one in every five deaths.

What are the causes?

Little is known about the actual causes of birth defects. Approximately 20% of birth defects may be attributed to genetic factors, another 10% attributed to environmental factors (including drug or alcohol abuse, infections, or exposure to certain medications or other chemicals), and the causes of the remaining 70% are currently unknown.

What are the costs?

In one year, the estimated lifetime cost to care for the number of U.S. children born with 18 common birth defects exceeds $8 billion nationally.1 In 2001 the Trust for America’s Health estimated the total lifetime costs to Minnesota of 12 selected birth defects to be $131 million.2 The average cost of caring for a child born with spina bifida for life is about $636,000.3

What are other states doing?

Currently, most states have programs for monitoring birth defects. However, these programs differ in the way they identify cases and perform follow-up activities.

What are MDH’s current activities?

The 2004 Legislature amended the birth defects statute (MS 144.2215) to enable establishment of the Minnesota Birth Defects Information System (MN-BDIS). This included clarifying language on goals, data sources, reporting without liability, data privacy, an opt-out clause, and guidelines on conducting research. The definition of a “birth defect” is consistent with that used by CDC, other states, and national organizations. The new text became effective March 2005, when MDH received a federal grant to support implementation.

The MDH is currently performing surveillance activities at all birthing hospitals in Hennepin and Ramsey Counties. Developing this program involved designing a secure data gathering and storage system, creating the opt-out documents, and collaborating with current service providers. The MDH is also working closely with the multi-disciplinary Birth Defects Work Group to evaluate data sources, prevention priorities, and possible future program directions. In the next few years, MDH is working to expand our birth defects tracking activities to the entire state of Minnesota

The following physicians provide consultation to assist MDH staff in accurate data collection:

Jamie L. Lohr, M.D.
Assistant Professor of Pediatrics
Division of Pediatric Cardiology
University of Minnesota Medical School
University of Minnesota Children's Hospital, Fairview

Richard C. Lussky, M.D., M.P.H., F.A.A.P.
Co-Medical Director, Newborn Intensive Care Unit, Hennepin County Medical Center
Assistant Professor of Pediatrics, University of Minnesota, School of Medicine

Nancy J. Mendelsohn, M.D.
Division of Medical Genetics
Children's Hospitals & Clinics of Minnesota
Assistant Professor of Pediatrics, University of Minnesota

What are the goals of the Birth Defects Prevention Program?

The primary goals of the Birth Defects Prevention Program are to:

  • Monitor incidence trends of birth defects to detect emerging health concerns and identify affected populations.
  • Educate physicians and the public regarding birth defects.
  • Ensure appropriate services are provided to affected families.
  • Prevent birth defects through targeted education.
  • Stimulate research on risk factors, treatment, prevention, and the cure of birth defects.

What birth defects are included in the Minnesota Birth Defects Information System (MN-BDIS)?

The Minnesota Department of Health Birth Defects Program gathers information on the 44 nationally reported birth defects as well as one additional heart defect.Many of these conditions are very severe. Other conditions are not life threatening and may be repaired shortly after birth or resolve on their own. These conditions might not be commonly referred to as “birth defects”.

Cardiac Conditions
   *Heart Conditions

    • Aortic Valve Stenosis
    • Atrial Septal Defect (ASD) (PFO)
    • Coarctation of the Aorta
    • Common Truncus
    • Ebstein's Anomaly
    • Endocardial Cushion Defect (AV Canal)
    • Hypoplastic Left Heart Syndrome
    • Patent Ductus Arteriosus (PDA)
    • Pulmonary Valve Atresia and Stenosis
    • Single Ventricle
    • Tetralogy of Fallot
    • Transposition of the Great Arteries
    • Tricuspid Valve Atresia and Stenosis
    • Ventricular Septal Defect (VSD)

Central Nervous System Conditions
   *Brain/Spine Conditions

    • Anencephalus
    • Encephalocele
    • Hydrocephalus
    • Microcephalus
    • Spina Bifida

Chromosome Conditions

    • Down Syndrome
    • Trisomy 13
    • Trisomy 18

Ear Conditions

    • Anotia / Microtia

Eye Conditions

    • Aniridia
    • Anophthalmia and Microphthalmia
    • Congenital Cataract

Gastrointestinal Conditions
*Stomach/Esophagus/Intestinal/Liver Conditions

    • Biliary Atresia
    • Esophaegeal Atresia
    • Hirschsprung's Disease
    • Pyloric Stenosis
    • Rectal and Large Intestinal Atresia / Stenosis

Genitourinary Conditions
   *Genital/Urinary/Kidney Conditions

    • Bladder Exstrophy
    • Hypospadias
    • Obstructive Genitourinary Defect
    • Renal Agenesis / Hypoplasia

Muscular Skeletal Conditions
   *Muscle/Bone Conditions

    • Congenital Hip Dislocation
    • Diaphragmatic Hernia
    • Gastroschisis
    • Omphalocele
    • Reduction Deformity: Lower Limbs
    • Reduction Deformity: Upper Limbs

Oral Conditions
   *Nose/Mouth Conditions

    • Choanal Atresia
    • Cleft Lip and Palate
    • Cleft Palate without Cleft Lip

Other Health Conditions

    • Fetal Alcohol Syndrome (FAS)

How will the MN-BDIS benefit Minnesota?

Better tracking of when and where birth defects occur and potential links to environmental and other factors would provide critical information to help prevent them in the future. Without a system in place, the assessment of disease trends is very difficult and the development of sound public health policy based on scientific data is nearly impossible. Knowledge of the occurrence of birth defects will help the MDH link families to the services they need and want. All data is private, meaning it can only be released to the individual and other carefully monitored organizations.

Why is an information system necessary?

Although there were some data available in the past for Minnesota regarding birth defects, they were not systematically collected, analyzed, and reported. A tracking system is necessary to minimize inaccuracies in rates and counts and to eliminate duplicates. Without collecting names, it would be impossible to provide services to families in need or provide them the opportunity to participate in research studies aimed at birth defects prevention.

Why can’t birth certificates be used to track birth defects?

Many studies have shown that birth defects are severely under-reported on birth certificates. Many defects are not identified on the birth certificate because they are not immediately recognizable at birth. In addition, it was found that the hospital staff member who completes the birth certificate is often untrained to gather pertinent information from medical records. In a small sample of Minnesota hospitals, it was found that only 30.5% of the birth certificates were accurate when compared to the medical records.

What if parents don’t want their child’s name in the MN-BDIS?

If, for any reason, parents want to exclude their child from the system, a form can be filled out and any personally identifying information on that child would be removed from the system. Any family that “opts out” of the MN-BDIS will not be contacted by the program in the future regarding that child. Other states have found that while some individuals feel very strongly about this issue, very few parents of children with birth defects actually select this option.

Where can I get additional information?

The MDH maintains a website for birth defects information at the state level. It contains background information on current and past activities, data and fact sheets on common conditions, and an overview of the current Birth Defects Work Group. For more information, see the MDH birth defects website.

It also contains links to other popular birth defects information web sites, including other MDH programs dealing with childhood health issues, the CDC, March of Dimes, National Birth Defects Prevention Network, and others.

* FAQs updated 12-2011

References

  1. California Birth Defects Monitoring Program
  2. Trust for America's Health:Birth Defects Tracking: Minnesota
  3. Centers for Disease Control and Prevention, Birth Defects Website