Some parents find out they are having a child with a craniofacial difference while pregnant—others find out when their baby is born. While it can be a frightening time with a lot of questions and uncertainties, don’t lose hope. There is a lot of support out there for you. Above all you need to remember your child will be more like other children than unlike them.
Here are five tips that will help you navigate care for a child with a craniofacial difference.
1. Know that you are not alone
One in every 500 kids are born with a head or facial malformation. Some conditions are rarer than others, but no matter what the difference, you can always find support. There are many groups and organizations available to help guide and support you.
For example, Dayton Children’s created a Facebook group for families of children with craniofacial differences. There you can get advice from families going through similar circumstances and benefit from their experience and advice.
2. Find the right care
From the very beginning, you need to find the right experts to take care of your child —those who are experienced in dealing with craniofacial conditions and specialize in children. There are so many services that are involved—from surgery to audiology, to psychology, to nutrition and speech therapy—that you need a pediatric expert and healthcare team that will explain your child’s condition and answer all your questions while helping you understand your treatment options and make choices that are right for your family. Another advantage of a comprehensive team is that often more than one operation can be performed by different specialists at the same time – with every effort made to minimize the amount of time the child needs to spend in the hospital and in surgery.
3. Start early
Often the best long term outcome starts with early intervention. Correcting physical differences early can help prevent development delays, growth delays and aid in essential sleep, breathing and eating habits. Work with your health care team to create a plan early, even before your baby is born, if you know he or she may be born with a head or facial condition.
4. Prepare for the long haul
Depending on the condition, your child may likely require several procedures. Again, choosing the right care team that not only offers exceptional care but compassion and support is vital. Most initial surgeries take place in the first 12 months but additional surgeries are often needed later in life as your child grows.
5. Build bridges
Along with medical challenges, your child will face some social challenges that go along with looking different. No parent wants to see the stares or hear the whispers that single their child out, but it is inevitable. View this as an opportunity to educate and build bridges for your child and in your community.
Speak publically at schools, churches and social groups that you know your child will be involved in. Teach those who will interact with your child that he or she may look or speak differently but that does not mean they are ‘less than’ any other child and it does not translate into a lack of intelligence.
On the playground, approach other parents and children and start a conversation. Explain your child’s difference and answer questions. Often people, especially kids, are scared or feel uncomfortable with what they don’t know or understand, so give them the information they need. By being open, honest and forthright, they will feel more comfortable asking questions and connecting with you and your child.
Overall remember the most important social structure for you child starts at home. Supportive family members are the best way to ensure a child grows up in a positive environment. With that, the child develops confidence and tools to educate others and advocate for themselves.
Below is a list to other trusted resources:
Craniofacial Resources
Children’s Craniofacial Association
FACES: The National Craniofacial Association
Federation for Children with Special Needs
Headlines: The Craniofacial Support Group
Cleft Lip and Palate Resources
Adopting Cleft-Affected Kids Online Support Group
American Cleft Palate-Craniofacial Association (Cleft Palate Foundation)
The Cleft Club Online Support Group
Craniosynostosis Resources
Cranio Kids: Fun Friends and Craniosynostosis Support
Craniosynostosis and Positional Plagiocephaly Support, Inc.
Hemangioma/Vascular Malformation Resources
Birthmarks and Hemangiomas InterNETwork Support
Birthmarks and Hemangiomas Support Group at iVillage.com
National Organization of Vascular Anomalies