Dear Parent, YOU are the best advocate!

No one knows your child better than you do, that is why it is important to be an active and informed participant in their medical care.

“To the world you may be one person; but to one person you may be the world” – Dr. Suess

When your child is diagnosed with CHD you are thrust into a whole new world – learning new medical vocabulary, memorizing heart anatomy you never knew was so complex, and navigating the best course of action for your unique child. It’s easy to get lost in the shuffle. You may be tempted to throw your hands up and let the doctors do whatever they think is best. Hit the pause button right there. It’s important to be able to trust your child’s care providers but you also play an vital role. Often times parents may be more “in tune” to subtle changes that medical professionals might miss early on. Take a look at these 6 ways to help care for your child by being their best advocate.

  • 6 Ways to Advocate for Your Medically Fragile Child
  • Early Intervention Services – Many children with CHD will require special services such as physical therapy, occupational therapy, or speech/feeding therapy to help them catch up after spending time in the hospital and recovering from heart surgery. Each state has a free program that provides these services for any child ages birth to 3. A parent can refer their own child for an evaluation and if services are needed they can be provided for free at a therapy facility or by a clinician who comes to the child’s home.
  • For Adults It is estimated that less than 10% of adults seek the recommended care they need from an Adult Congenital Heart Disease specialist. If you have CHD don’t be one of the many lost to follow up care. CHD is a lifelong condition and surgery is not a cure.Take a look at this resource from the Adult Congenital Heart Association about lifelong care and find a provider near you.