January is National Birth Defects Prevention Month. Hospitalization for birth defects costs the U.S. over $2.6 billion annually. This cost is higher when including the financial and emotional impact of living with birth defects.
In the United States, birth defects have led to more than 139,000 hospital stays during a single year (2004), resulting in $2.6 billion in hospital costs alone (1). Often, babies born with birth defects need special treatments or services to thrive, adding to the costs of their care. Families, communities, and the government share these costs. Examples of costs of certain birth defects are shown below:
- Heart defects: One study showed that overall hospital costs for people with a congenital heart defect were about $1.4 billion in a single year (1).
- Spina bifida: A 2012 study using data from Florida showed hospital costs for a typical baby born with spina bifida were about $21,900 (ranging up to $1,350,700) (2).
- Down syndrome: The medical costs for a child with Down syndrome were 12 to 13 times higher than a child without Down syndrome. If a child with Down syndrome also has a congenital heart defect, families experience even higher medical costs (3).
Beyond the financial impacts, what are the emotional costs of birth defects?
Birth defects affect the entire family. Meeting the needs of a person affected by a birth defect can involve the whole family and can be challenging at times. However, finding resources, knowing what to expect, and planning for the future can help. Kate's son, Jake, was born with a cleft lip and palate. She shares her experience below.
Everyone told me once I saw him I'd instantly fall in love with that tiny wide smile. But that's not the way it happened. I don't know if it was because I didn't get to hold him for the first two days, or because I wasn't breastfeeding, or because of a million other factors, but I wouldn't bond with my son for another two months. Whatever the real reason I had trouble bonding with Jake, I felt it must be because he was different, and I was a horrible person for not being able to love him. For the first few months, I lived in a haze of guilt, shame and anger. I felt I had to hide these awful feelings and pretend like I was the strong, loving mother I was supposed to be. There was so much help available for my son. I didn't even know to look for help for myself. Now, I have a fantastic support network of online forums, a local cleft parents' group, and several close friends I've met through this experience. But it took me a long time to find them all. I had to work through the confusion of emotions on my own. His needs were obvious to see. But the needs of parents can get pushed aside, often by the parents themselves. As I've told many struggling parents “to care for your child, you need to care for yourself first.” That's easy to say, but difficult to do. Over the last two years, I've had to learn how.
— Kate, mother of a child with cleft lip and palate
What is CDC doing?
CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) works to identify causes of birth defects, find opportunities to prevent them, and improve the health of those living with birth defects.
- Tracking: Accurately tracking birth defects is the first step in prevention. CDC's NCBDDD funds 14 states to track major birth defects. State systems use data from population-based tracking to direct birth defects prevention activities and refer children affected by birth defects to needed services. In addition, 16 of the 24 grantees funded by CDC's National Environmental Public Health Tracking Network also report birth defects data. These data are used to better understand the relationship between birth defects and environmental factors.
- Research: CDC's NCBDDD funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (births 1997-2011) and the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS, to start in 2014). These studies work to identify risk factors for birth defects. CDC also researches health services use and costs associated with birth defects, which are important considerations in helping children with birth defects reach their full potential.
- Prevention: CDC and its partners can use what they learn through research to prevent birth defects.
- Folic acid : We have learned that getting folic acid before and during the early weeks of pregnancy can reduce the risk of serious birth defects of the brain and spine (spina bifida and anencephaly). About 15,000 babies in the United States have been born without one of these serious birth defects as a result of folic acid fortification.
- Preconception care: CDC and its partners work to educate women about the importance of preconception health through a campaign called Show Your Love.
- Improving the lives of individuals with birth defects: Babies who have birth defects often need special care and treatments to survive and thrive. Birth defects tracking systems provide one way to identify and refer children for services they need as early as possible. Early intervention is vital to improving outcomes for these babies.
Russo CA, Elixhauser A. Hospitalizations for Birth Defects, 2004. HCUP Statistical Brief #24. 2007. Rockville, MD, U.S. Agency for Healthcare Research and Quality.
Radcliff E, Cassell CH, Tanner JP, Kirby RS, Watkins S, Correia J, et al. Hospital use, associated costs, and payer status for infants born with spina bifida. Birth Defects Res A Clin Mol Teratol. 2012;94:1044-53.
Boulet SL, Molinari NA, Grosse SD, Honein MA, Correa-Villaseñor A. Health care expenditures for infants and young children with Down syndrome in a privately insured population. J Pediatr. 2008;153:241-6.
January 20, 2014