We know the fear, the sadness, the devastation, and the anger you have felt since your child was diagnosed with a congenital heart defect (CHD). We know you are looking for answers, for information, for anything that will help you understand this and get you through what is ahead for you. How do we know this? Because we have been there, too.
Heart Mom to Heart Mom: You are not alone on this journey!
Don't compare your child to "heart-healthy" children. If you want to see if your child is meeting milestones, ask your child's doctors what is "normal" for a child with his or her heart defect―not what is normal for a heart-healthy child your child's age.
You choose who to listen to, take advice from, and rely on during your journey. Not everyone will understand what you are going though. The ones who do, who want to understand how to help you, will be integral parts of your support system.
Don't be afraid to ask questions. If you feel like something is wrong, don't be afraid to ask your child's healthcare team. Everyone has unique strengths and knowledge. For example, if you are having trouble with insurance coverage, turn to your pediatrician. He or she can gather the right information and advocate on your child's behalf—a good thing to keep in mind!
Don't be afraid to get a second opinion. Good and humble doctors will welcome a second opinion.
Become an expert and an advocate. Knowledge is power. Immerse yourself into learning as much as you can about your child's diagnosis, medication, and treatment plan. Remember to avoid "internet overload" by sticking to reputable websites like HealthyChildren.org. Don't forget to ask your child's doctors where he or she recommends going to learn more. You truly are your child's best advocate. Often, mothers will notice or sense things that others cannot—our maternal instincts are usually right.
Ask for help if you need it. It's often hard for moms to ask for help―we want to feel like we can do it all. But, you don't need to be superwoman! Make a list of things people can help you with, and the next time someone asks, let them do one of the things on the list.
Take some time for yourself. You are still a person and need time to recharge. When your child is in the hospital, we know this is especially tough to do. But, you have the most expensive babysitters your child will ever have at your disposal—take a break! Get rest when you can, drink lots of water, and go for a walk once a day. Getting outside of those hospital walls―even for a couple of minutes―will help you feel better.
Stay positive. Don't let others' opinions of the situation dictate your emotional well-being. People may say or do offensive things. Learn to let them roll; they just don't know any better and most of the time it's innocent ignorance.
YOU CAN DO THIS! You are stronger than you think!
Additional Information from HealthyChildren.org:
Additional information regarding congenital heart defects and lifelong cardiac care is available at the Congenital Heart Public Health Consortium (CHPHC) website, www.chphc.org. The CHPHC is housed at the American Academy of Pediatrics through a grant from the Centers for Disease Control and Prevention in an effort to utilize public health principles to affect change for those whose lives are impacted by a CHD. Organizational members of the Consortium represent the voice of providers, patients, families, clinicians and researchers.