Talking About a Diagnosis
The decision to share your child’s diagnosis with different people in your life is very personal. Many parents begin by sharing the diagnosis with their family. However, there is no one-size-fits-all family. Your family is the group of people who are important to you. They might be related to you biologically, legally (through adoption or marriage), or emotionally (through affection, dependence, obligation, or cooperation). Family can include relatives such as siblings, parents, aunts, uncles, cousins, and even close friends.
You and your partner may want to consider the following questions when determining who to tell:
- Who will provide me, my partner and my child with the most support?
- Do any of my family members or friends have experience with genetic or health conditions?
- How have my family members or friends dealt a health issue in the past?
- How will telling people make me feel? Comforted, uncomfortable, scared, relieved?
- Are there family issues that would make sharing the diagnosis especially painful or awkward?
- Do I gain strength and well-being from talking with friends or family? 1
Conditions screened for by newborn screen affect not only you but can also affect your biological family members as well. It is helpful for you and your family members to know your whole family health history, including any genetic conditions that might run in your family. Putting the whole picture together will help you and your relatives:
- Identify risks due to shared genes.
- Talk to each other about health
- Summarize health information to give to doctors and other health professionals
Another reason why you may want to consider discussing the condition with your immediate and extended family and friends is that individuals who know about and understand your child’s condition may be better able to understand your family’s needs. In this way, they can be a valuable source of support for you.
You should be honest about the unexpected news, your emotional state, the fact that you are learning, and your hope for the future. Some topics to share are major signs and symptoms of the condition and how the condition is passed down through families. It is up to you how much or how little you tell.
Plan an individual conversation
You may want to talk with certain family members or friends in more detail. Some people respond better to one-on-one talks rather than conversations in a large group setting. These talks should take place when both you and your family member feel up to it. You should not feel rushed or tired. Also, it does not need to be a one-time conversation - the discussion can continue in the future.
Send a letter
You may wish to send a letter to your family with an update on your child’s health and information about the condition. Your child’s doctor or genetic counselor may be able to help you write this letter and identify who in the family you would like to tell.
Use what you have
Test results, letters from your child’s doctor, or other information you received about your child’s diagnosis can be shared with family or friends to help them understand the condition. It may help explain their chances of being a carrier of the condition or their chance of passing the condition on to their children (link to genetics and family history page). Websites and brochures that have been useful for you might also be useful for your family members.
If you have a friend or family member who is a medical professional or who understands the condition and has been helpful to you throughout your child’s diagnosis and treatment, it could be useful to have him or her there to support you during an in-person conversation. He or she may also be able to help you write a message to your family members or friends if you choose to share the diagnosis through a letter or email.
Know the facts
Know the facts about the condition so you can answer any questions your family members have or refer them to other resources. Use your own experiences and information you learned from your child’s doctor and others.
Know how it might impact your family
For each family member you talk to, understand what your child’s diagnosis might mean for him or her. For example, other family members may have an increased chance of being a carrier for most of the conditions identified through newborn screening. This means they have one copy of the gene change (link to genetics and family history). This is not a medical problem, since most carriers do not have symptoms of the condition. However, it is helpful information for family planning.
Get ready for different reactions
There is little you can do to control your family member or friend’s response to the information. Some family members or friends may not react the way that you wanted or expected. We are all at different emotional places at different times and will understand the information differently. It is normal to be anxious or uncomfortable if something is unfamiliar. This can sometimes cause people do or say things that are hurtful.
Some of your family members or friends may not want to learn information regarding your child’s diagnosis. Although this can be hurtful, be sensitive to a person’s wishes not to talk about certain topics. They many just need some time to understand the information before they can give you the response you want and need.
Down Syndrome Pregnancy: Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome
Genetic Alliance: How Do I Talk to My Family about Gaucher?
Family Testing for Clotting Disorders
Talking with Family Members