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Why your child was referred to Genetic Counseling – and what to expect
Some children with Cerebral Palsy (CP) may have underlying genetic differences that help explain their development. Recent research shows that about 1 in 4 children with CP may have a genetic change that contributed to how their body and brain developed.
Genetic testing can:
- Give a name or diagnosis that helps explain your child’s symptoms
- Offer insights into other health needs now or in the future
- Clarify whether other family members (including future children) may share similar symptoms
- Support personalized care or treatment options for your child
- Help your child’s care team understand your child’s needs better
- Connect you with other families who have similar experiences
Questions Caregivers Often Ask
Genetic testing looks at your child’s genes or chromosomes to find changes (often called genetic change or variant). Our genes act like instructions for how our body grows, develops, and works. Some variants can lead to health or developmental changes. Genetic testing can help us find a variant that causes a genetic condition, or it can tell us that your child does not have a specific genetic condition. Testing may involve:
- A blood sample
- A cheek swab
A genetic counselor is a health care professional trained in both genetics and family support who:
- Helps you understand how genes work and how genes may affect development
- Reviews testing options with you
- Helps you understand test results
- Supports your family’s decision-making process
No. The genetics team will give you information to help you decide what is best for your family.
Yes. Many children are the first in their family to have a genetic condition. Sometimes these changes happen for the first time in the child or are inherited in a way that doesn’t cause symptoms in the parents.
Most insurance plans do cover genetic testing. Our team will help you understand the process and cost of testing based on your child’s insurance.
Maybe. Depending on the genetic testing recommended by your child’s provider or our genetics team, your child might get their blood drawn or their cheek swabbed. We will try to get your child’s blood drawn or cheek swab done on the same day as the in-person visit, but this may not happen because of insurance coverage.
Your child does not have to be present for a virtual visit, but we would recommend they come in for an in-person visit so we can collect samples that day, if possible.
Ideally, both biological parents—if both are involved in the child’s care and it’s safe for everyone involved—would attend this visit. We take a history from both biological parents and typically order genetic testing that involves both biological parents and the child, and we need everyone’s consent to participate.
More Information
Learn more by visiting the Genetics page at gillettechildrens.org/conditions-care/genetics.
This information is for educational purposes only. It is not intended to replace the advice of your health care providers. If you have any questions, talk with your doctor or others on your health care team.
If you are a Gillette patient with urgent questions or concerns, please contact the Nurse Help Line at 651-229-3890.
The information on this page is reviewed by Gillette Children's medical editors for general educational purposes.
