Learning your child has a CHD can be overwhelming. Suddenly, you’re thrust into unfamiliar territory filled with strange terminology and new doctors. But so many families have bee there too, and they have so much knowledge to share, garnered through their experience. PCHA recently asked the CHD Community, families and patients, to share their advice for new parents feeling overwhelmed. This is what they had to say.
1. You Are NOT Alone
CHD is the number one birth defect, there are lot of parents or patients in your community to learn from and lean on. Parents often find it helpful to talk to each other, someone who knows what their going through.
Also, don’t be afraid to take your friends and family up on the help they offer. They love you, and are there to help lighten your load. Let them.
2. Take Care of Yourself
You want to be there for your Heart Warrior, but you are only human. Sometimes you need a break too. If you’re not getting the rest you need, you’re less able to effectively care for your child.
3. Go Easy on Yourself
When you learn your child has a CHD so many different emotions will flood through you. Remember this is normal. Be kind to yourself, and take comfort in that your Heart Warrior will understand you’re doing your best for them.
4. Treat Your Heart Warrior as “Normal” as Possible
Let your Heart Warrior find their own limits, and push them to enjoy as much of life as they can. It’s important that they also learn responsibility and accountability, like their heart healthy counterparts. They will need to be able to manage their own care and know their condition as they grow up.
5. You are Stronger than You Think
The diagnosis is scary, and it can be overwhelming, but you are more capable than you think. And so is your Heart Warrior. Their propensity for resilience may surprise you and provide you will courage.
6. Take One Day at a Time
There will be good days and bad days, sometimes good hours and bad hours. Enjoy every positive moment, and try not to spend time worrying too much about the future.
7. Don’t be Afraid to Advocate for Your Child
It’s OK to question your child’s doctor. It’s OK to get 2nd opinions. You are your child’s voice, and it’s OK to speak up when you need clarification or when your uncomfortable with a situation.
8. Every Child is Different
It is natural to want to know what to expect and compare our Heart Warrior’s journey with others that have the same CHD. But what goes for one child, may not be true for another.
9. Ask Questions and Keep Records
Your child’s doctors will throw a lot of new terms at you and explain unfamiliar procedures. Ask questions about what you don’t understand. There is no such thing as a stupid question.
Write it down. Anything that is important or difficult to remember, write it down. Keeping records is important to keep things straight , especially if you are seeing multiple doctors at various locations.
10. Educate Yourself
Don’t Google. Make sure you find trusted resources to learn about your child’s condition. Soon you will be an expert in your own right. Be sure the material you read is reliable. Ask your child’s doctor or other heart families for recommendations of sources of information.
*Please note the information in this post is not meant to be a substitute for medical advice.