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Living With Conditions Talking About a Diagnosis

When your baby is diagnosed with a condition, it can be very overwhelming. Sharing the diagnosis with other family members and friends can be both stressful and a source of comfort. However, it is important to remember that the decision to share your newborn baby’s condition is personal and should be on your own terms. While every family will approach talking about their baby’s condition differently, parents should start to feel more comfortable communicating with family and peers about their baby’s condition while still continuing to learn and ask questions. In fact, it is completely normal not to have all the answers prior to sharing.

When you are ready to begin talking about your baby’s condition, there are certain matters to consider when preparing for and starting these conversations. The first step is to learn more your baby’s condition and to talk to your healthcare provider with any questions or concerns you may have. You can find more information on your baby’s condition here.

After understanding the facts around your baby’s condition, it is important to consider what this condition might mean for your baby and how it might impact your family. It can be hard to start this conversation with family and friends, but some topics to consider sharing may include major signs and symptoms of the condition, how the condition is passed down through families, and implications for your family and future family planning.

Additionally, since your baby’s condition was detected through newborn screening, it is important to communicate that your baby is likely to grow up and lead a normal, healthy life if given the proper treatment. Many of these conditions are treated with special diets, while others require medication or other medical interventions. When a treatment plan is started early and followed carefully, your baby has the best chance for normal growth and development.

When your family is ready to begin talking about your baby’s condition, visit our Sharing a Diagnosis page. For more resources on sharing and managing a diagnosis, visit

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Last Reviewed - 10/12/2018

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