By Jodi Lemacks, Kristin Fowles, Amanda Mateus, and Kayte Thomas

Edited by C J Oakes

Editor’s Note: January is National Birth Defect Prevention Month. Birth Defects are far more common than many believe. Some are relatively minor, such as being born with a cleft lip, while others far more serious, such as born with a hole in the heart. In all cases, there is an emotional toll. In keeping with the month, the following may be helpful to other parents of children with birth defects.

Insights from Parents

Birth defects affect us all, but particularly families with children who have birth defects. With 1 in 33 babies currently born with a birth defect, and with birth defects being a leading cause of morbidity and mortality in children, there are issues that need to be addressed to help all families be healthier and happier.

First, parents need others to be aware of the impact of birth defects and how they affect quality of life within families and in the children.

Second, parents would like better communication from and with healthcare professionals so that they are better able to care for their child.

Third, prevention of birth defects is not only essential for the health of future generations, but also to prevent some of the co-morbidities that come with the birth defects. Parents can be extremely helpful in awareness and funding for prevention, but they need to be connected with a common cause.

Finally, every parent wants their child to reach adulthood and then move on to old age, but because many children, until recently, did not survive to adulthood, the resources to help parents and teens make this transition are often not available. Parents need these resources to ensure their children get adequate, and sometimes life-saving, care throughout their life cycle.

As parents of children with birth defects, the purpose of this article is to share our thoughts and experiences with other parents, researchers and health care providers.

Birth Defects and Quality of Life

One of the most devastating, life-changing events for parents is finding out their child has a birth defect.

What they do with this news depends on many factors:

  • it depends on the knowledge, attitude, and style of communication of the provider giving the diagnosis;
  • it depends on the information they are given after diagnosis and whether they are connected to the appropriate services and support groups;
  • and, it is affected by personal beliefs, culture, education level, and support available to the parents.

Birth Defects During Pregnancy (Prenatal)

The first thing most parents want to know about their unborn baby is whether the baby is healthy. When parents learn about a baby’s birth defect in the prenatal period, they are often devastated. They may become so preoccupied with their baby’s medical condition and medical visits that they cannot enjoy their pregnancy.

Some mothers even forgo baby showers and other celebrations because they feel somehow undeserving or fearful of the post-natal outcomes. For these parents, taking the time to relax and feel “normal” can help to relieve stress, but it is often very difficult. They wonder what their life will be like with a baby who has a birth defect—many times a birth defect they have never heard of or seen.

Images of their baby sick and dying, which may be a reality, haunt the rest of the pregnancy. Parents are often faced with many tough decisions during this time, and they need reliable and accurate information. Compassion, caring and connecting with others who have traveled a similar path may also help parents immensely during this time.

Conclusion

Birth defects are common, costly and critical. They impact the quality of life of the whole family, often in negative ways. For the vast majority of birth defects we do not know why they occur. More research is needed.

We want to increase the likelihood that all babies are born without birth defects and prevention of secondary issues and co-morbidities. For those that we cannot prevent, we urge you to help us make a difference in their lives.

This takes a collective effort to educate the general public, policy makers, and all health care providers. It takes work on communication by healthcare professionals so that parents understand their child’s birth defect, necessary medical care, how to find current and relevant information.

Parents need to have access to services, including support groups that can help them care for their child, in addition to benefitting the entire family. It also takes a commitment by Congressional leaders at the federal level as well as the state level to support the necessary research. We hope this article provides a beneficial insight into our experiences.

This article is republished in part from, Insights from Parents about Caring for a Child with Birth Defects.