September 14, 2016

Hydrocephalus Awareness MonthHow to Talk to Your Children About Their Sibling’s Hydrocephalus

For every 500-1,000 babies born in the Unites States, one will have hydrocephalus. It is one of the most common birth defects, and it can develop later in life. In fact, over one million people in this country are living with hydrocephalus. However, when it’s your child who is diagnosed with “water on the brain,” it’s so much more than a statistic. It’s your new reality.

After the diagnosis, you may be overwhelmed with questions. You may think, “What does this mean for my child’s development? What is the surgery like? How many surgeries will (s)he have?” Your medical team can help answer these questions and walk you through the process.

However, if your child with hydrocephalus isn’t your only child, you may have another worry on your mind that doctors can’t help you with: How do I talk to my kids about this?

What to Say:

As a parent, you know your children best. However, this list of dos and don’ts may help guide your conversations with your children:

  • Do tell them
    You may be tempted to shield your children from the worry you are experiencing. However, they are smart and will sense that something is wrong. Your children will have a better time adjusting if they know they can rely on you to give them the information they need.
  • Don’t lie
    Depending on your children’s ages and communication skills, it may not be necessary to tell the whole truth. However, flat-out lies may cause distrust. In this uncertain time, they need to know they can rely on you. Sometimes, this means saying “I don’t know.” That’s OK.
  • Give them an outlet to express their feelings
    Like adults, children have complex and different reactions to the illness of a loved one. Make sure to give your children the space and tools they need to grieve and process.
  • Don’t have only one conversation
    Keep the conversation on-going and let your children know that you are there to answer questions as best you can.
  • Do allow your family to have fun
    It can be difficult to allow yourself to have fun when a child is ill. However, a little laughter and joy can help the whole family bond and heal.
  • Do use words they can understand
    Young children, and even adults can have trouble saying, “hydrocephalus.” Try calling it “water on the brain,” if it helps.

Hydrocephalus Awareness Month

This September is Hydrocephalus Awareness Month. If you haven’t already, you may want to take this as an opportunity to open a conversation with your family. Maybe even participate in a hydrocephalus awareness walk together! By including and communicating with all of your children, you can get through the tough stuff together.

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