Telling Loved Ones About Your Child's SMA Diagnosis

After getting news that your child has a serious illness like spinal muscular atrophy (SMA), you will likely turn to family and friends for support. Here are some things to think about before you share your child's health diagnosis with the people in your life.

Preparing for the conversation

Before you tell others about the diagnosis, consider how you feel emotionally. Are you sad, angry, or afraid? Maybe you have a mix of emotions. Whatever you are feeling is normal.¹

Think about how much information you want to disclose, such as the nature of your child's condition, treatment, and recovery outlook. You may prefer to share more with those in your inner circle while holding back details from people you know more casually.¹

If there is a topic that is just too sensitive to discuss right now (or ever), like your choice of treatment, prepare for how you will respond to questions about it. It could be as simple as saying, “I am not comfortable discussing that. Let’s talk about something else.” Then you can change the subject.¹

Deciding who to tell about the diagnosis

Think about the people in your life you are closest to, and make a list. It may include your partner, your other children, or close friends and family. Then, make a separate list of those you may be in contact with only occasionally. Decide who you want to share the news with and whether you will do it yourself or appoint someone to speak on your behalf.¹

At work, consider how much information your coworkers need to know and how much you feel comfortable sharing. If you need time off for medical appointments or other accommodations, you may need to tell your boss or human resources person about your child's condition.¹

Starting the conversation

First, figure out which method you will use to tell your loved ones about your child's diagnosis. Face-to-face is not always possible, so you may have to talk to them by phone or video chat.²

To help set the tone, choose a time and place free of distractions. Then, ease into the conversation. You can say something like, “This is not easy to share, but I need to talk to you about something important.” If the outlook for treatment is positive, share that up front, too. “Even though this is bad news, the doctor says the SMA should get better with treatment.”²

It can be overwhelming to hear that someone you care about has a serious illness, so try to share what you know a little bit at a time. Then pause and ask your loved one if they understand before continuing the conversation.²

If you are up to it, ask your loved one how they feel. This can help encourage open conversation. However, it also takes a lot of emotional energy that you may not have while dealing with your own feelings.¹

If the thought of sharing frequent updates about your child's condition is too much, ask a friend or family member to keep everyone in the loop. You can also send group text messages or emails to avoid having to repeat the same information over and over. Websites like CaringBridge help people going through a health journey share news about their condition.¹

Talking to kids about the diagnosis

Children process information differently than adults, so think about how you can meet their needs. Here are some ideas:³

• Consider their age. Use age-appropriate words and terms to talk about your child's SMA. For example, you can say, “Your sister/brother is sick with an illness called spinal muscular atrophy, but doctors are doing their best to help them get stronger.”
• It is okay to show emotion. Being diagnosed with a serious illness can stir up strong emotions in you and your kids. It is okay to be sad, cry, or feel upset together. Acknowledge your child’s feelings, and let them know they can come to you with questions or concerns.
• Have more than one conversation. Keep in mind that young children may have trouble focusing for long periods. You may need to keep the first conversation short and revisit it later.