ESP 
A palliative care clinician or psychologist can provide space for talking through your concerns about sharing your child’s diagnosis. A genetic counselor can suggest accurate and appropriate language to use.
Communicating the Diagnosis
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After receiving a diagnosis for your child and getting through the initial stages of grief and acceptance, you may want to tell others what you have learned. You may want to gain support while at the same time not being overwhelmed with questions or advice. There is no right time or one method of sharing this news. As your child’s caregiver you can decide when, how and what to share.
ESP Early in a new diagnosis, your child may become frustrated as they experience changes. Speech, vision, hearing and movement may be affected. A disease expert can help you anticipate these changes, so that you can describe to your child what is happening and provide reassurance. You may eventually wish to share some of this information with others as well.
Siblings are likely to note these changes and may have their own questions and concerns. If the condition is genetic, you will also at some point want to address the possibility that the sibling(s) are carriers. This is a topic to discuss with a genetic counselor and/or clinician, so that it is done at an age-appropriate interval and with sensitive, accurate language.
Sharing your child’s diagnosis outside your immediate family circle gives friends and extended family a better understanding of what your family is going through (and in some cases, to alert others to genetic risks). Naturally, you are hoping for love and empathy. Keeping this goal in mind can help you determine when, how, and how much to share. Some families communicate about the diagnosis after they have had time to adjust to the information themselves, while some share the diagnosis immediately. You may feel obligated to share with others if they have been very involved in the diagnosis journey, but the decision still is entirely up to you.
It is acceptable to share information in stages, and doing so may help keep you from feeling overwhelmed. Perhaps sharing that your child has inherited a genetic condition, or that it is progressive, or that it affects certain organ systems, is sufficient for any given moment. It is also acceptable to say that you are still digesting the information and learning, and that you will share more details when you’re ready. It is likely that people will have many questions for you but you don’t have to answer until you’re ready. If your child’s condition is inherited, a genetic counselor can help draft a family letter that summarizes the gene and the familial genetic variations. Once they have the information, your family members can decide how they wish to proceed (and it is entirely possible that they won’t all proceed in the same way).
Over time, a less detailed letter or email, or series of communications to your community, will allow you to share as much (or as little) as you wish, while protecting you from unwanted questions, comments or advice. Family and friends will tend to take your lead. You can announce a fundraising event, share online resources, or offer other information you have learned in this initial communication. Some families use social media as their method of sharing and communication regarding how their child and their family are doing; others prefer more privacy. There are no rights or wrongs; only what you feel is in your and your family’s best interest.
ESP It is understandable to feel anxious about sharing your child’s diagnosis with others. You may feel vulnerable and exposed. You may fear disappointment or being hurt by the responses of others as they learn the news. Will they judge you? Support you? Distance themselves?
It is also natural to want to control the amount of information others receive. You may not be ready for friends and family to know all the information about your child’s condition. You may not want others to know about the clinical progression or prognosis. You may feel that sharing the diagnosis will invite others to ask questions that you may not be ready to address.
If your child’s condition has a genetic cause, you may feel guilt that you and/or your partner has somehow inflicted this illness and difficulty on your family and community. At the same time, you may feel the obligation to inform others, so that they can become educated about their own genetic risks. This is something to discuss with a genetic counselor, as there are multiple ethical considerations.
