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Steps To Take If Your Child Suffers from Birth Defects
Every year in the United States, 1:33 babies born is affected by a birth defect. Learning that your baby has a birth defect can be life changing. You may have many questions and emotions. You may be unsure where to begin to find resources and care for yourself and your baby. First, it is important to connect with others. Talking to your partner, family members, a counselor or a social worker can help you work through feelings so that you can make logical, healthy decisions.
Educate yourself about your child’s condition. Ask questions of doctors and healthcare providers. Get a second opinion if you feel the need. There are many organizations to turn to for information: The March of Dimes, the ARC, Family Voices and the National Information Center for Children and Youth With Disabilities are just a few. Books, community groups and healthcare organizations can also provide a wealth of information. Treatment associated with birth defects can be expensive, so it is important to educate yourself about treatment options, health insurance, nonprofits and health subsidies in your area. A social worker is an important point of contact for information on these matters.
It will take a team of professionals to care for your child’s needs. You are your child’s most important advocate and early intervention can provide better outcomes in the long term. Form your team early: Ask about support with feeding and nutrition, physical assistance such as assistive tools and technology, therapies and social work. This intervention will form the framework of support throughout development and into adulthood.
A birth defect is not just an immediate consideration but one that may change future considerations of a family as well. Some children with birth defects require lifelong care. Considering how that care will be provided and setting up social services or a trust to manage care can be an important consideration. Parents may also face choices about adding to their family depending on the child’s continuing needs, family ability and the likelihood of future birth defects.