Abstract
Birth defects affect 1 in 33 babies. Having a child with a birth defect impacts the whole family. Parents of children who have birth defects face unique challenges and desire to make life better for their kids. They also want to help to prevent birth defects in the future. Some of the challenges parents face involve communication with healthcare professionals, quality of life issues, creating awareness and advocating for research and funding, finding resources and support, and helping teens transition to appropriate, specialized adult care. This paper addresses these issues and their sub-issues, provides examples, and makes suggestions for improvement and research.
Highlights
Birth defects affect us all, but families with children who have birth defects
After a child is diagnosed with a birth defect, parents often go through stages of grief similar to those they would have if they had lost the child
Parents of children with birth defects have the normal anxieties that come with raising children in addition to the many fears and anxieties that come with having a child with birth defects
Summary
Birth defects affect us all, but families with children who have birth defects. 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. Every parent wants their child to reach adulthood and 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.
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