January is National Birth Defects Prevention Month, and this year the campaign being presented is that birth defects are "Costly, Common and Critical." This campaign is sponsored by the non-profit organization National Birth Defects Prevention Network (NBDPN). The NBDPN is a volunteer-based collaborative non-profit that works to capture national statistics on the numbers and types of birth defects occurring in the USA, along with coordinating research and prevention efforts. This multi-disciplinary organization is made up of public health officials, consumers and researchers working together to reduce birth defects and their short and long term consequences. They collaborate with the Center for Disease Control and Prevention and March of Dimes as well as other well known organizations and agencies.
One in 33 babies born are affected by a birth defect. A baby with a birth defect is born every 4 1/2 minutes in the USA and these defects are responsible for one in five infant deaths. Not all birth defects are detected prior to birth, though many are identified during an ultrasound or amniocentesis. There are some birth defects that are not detected before the newborn leaves the hospital. All birth defects are not related to genetics, some occur randomly during fetal development and others are a result of circumstances during pregnancy. Total hospital costs of children with birth defects exceed $2.6 billion. Congenital cardiac and circulatory birth defects account for $1.4 billion of these annual hospital costs. Defects of the heart and limbs are the most common kind of birth defects. Only reasons for 30% of birth defects are known, but ongoing research is working towards identifying the unknown causes.
If you are an educator or a provider who offers a preconception class, your class is a great opportunity to share some of the resources on birth defect prevention, so that women and their partners can do what they can to reduce the likelihood of having a child with a birth defect. That includes a discussion about getting enough folic acid, having regular medical checkups, making sure medical conditions, such as diabetes, are under control, testing for infectious diseases and being up to date on vaccinations. Also avoiding cigarettes, alcohol and other drugs.
The NBDPN provides information and fact sheets on a variety of topics for consumers in both English and Spanish, as well as webinars that appeal to professionals, health care providers and researchers. They are also holding a virtual conference beginning in late February, that you can attend.
If you are not a health care provider, you may not know that a family in your class is carrying a baby with a birth defect. They may disclose this information to the class, they may share with you privately or they may say nothing. They might not even know themselves at the time. It is imperative that you have resources available should they ask. You may find out after the baby is born if class members stays in touch with you or there is a class reunion. Your families may look to you for information and support.
Resources for your students and their families
- A comprehensive list of parent support groups for the most common birth defects
- Resources for Grandparents of a child with birth defects
- Consumer handouts and posters are available (in English and Spanish) for your students and clients include "Ten Things You Need To Know About Birth Defects."
- General birth defects and birth defects data - internet resource
Families you work with may also appreciate referrals to counselors, therapists and local support groups, to help them deal with the emotions and stress of having a baby with a birth defect, who may spend time in the NICU and be facing significant medical care, treatment and surgeries in the future. Having a comprehensive list prepared in advance, with the appropriate local resources, will be helpful should you have a this situation.
As childbirth educators and other professionals working with an expectant family, we have an obligation to help prepare families for when things do not always go as planned. The relationships we develop with families during the vulnerable year of pregnancy, birth and postpartum makes our role very important in helping families be ready for whatever comes.
Have you had a family in your class who delivered a baby with birth defects? Did they let you know about the circumstances? Before or after birth? What did you do to help this family be prepared? What resources did they find valuable?How did this affect what you said or did in your childbirth education course? Please sensitively share your experiences with our readers in the comments section so we can all be better prepared for supporting families whose child had a birth defect and their journey did not go as planned.