Telling Others About Your CHD Child

Your child has been diagnosed with one or more heart defects. On top of processing your own thoughts and emotions you have to tell your family, friends, coworkers, etc. what is happening with your child.There are a wide variety of reactions you will see from people.  Some are surprising, some are disappointing.  It will change the way you think about some people and it will change the way some people think about you. Some people just don’t know how to react.  Others will overwhelm you with their support and generosity.

When you talk about your child’s diagnosis here are some of the possible reactions.  You’ll hear, “if there is anything I can do to help, let me know.”  Some will actually mean what they say and will be there for you.  Others won’t and will disappear when times get tough.  Some won’t want to hear about your child, they’d prefer to pretend it wasn’t happening because they can’t handle the reality of the situation.

Others will tell you maybe the doctors are wrong to try to make you or themselves feel better.  They might even think this false hope is helpful in some way.  This can be frustrating especially when you’re the one who has seen the tests and spoken with the doctors. It’s not helpful. You don’t have the luxury of denial since you have to make plans for getting your child the best medical treatment, making sure your finances are in order to pay for care, making work arrangements if you need extended time off or to work from the hospital or even another city.  For your baby you need to face the situation directly.  False hope the doctors are wrong will only prevent you from making necessary preparations, ultimately making everything more difficult.

On the other hand, you’ll have some people really step up to help you.  Some might help by watching your other kids so you can be in the hospital. They might bring you takeout when you get home from the hospital so you don’t have to cook. They might just be there to listen when you need to talk out some of your emotions.  They might help you raise money for CHD charities or even help you get by when money is tight. I’ve found there is no limit to some people’s kindness and generosity.  Throughout my entire experience I have held it together at every point, except when people have gone above and beyond helping when I didn’t expect them too. I’ll admit these are the times when I’ve been moved to tears.

You’ll see the best and worst in people.  The important thing to remember is no matter what reaction you see in people it is their reaction not yours.  You can’t change people or how they feel.  You can show them how you handle the situation and possibly inspire them by your strength, positivity and faith.

Comments

  1. This post sums up exactly our experience. Breaking the news that our unborn baby had a heart defect was awful (we were told at 20weeks scan. Our daughter is now almost 5 weeks old and had open heart surgery at 5 days old. we were in a hospital 5 hours away from home and away from our 2 older children.
    can i please share this post on my blog. my e-mail is gemmamurphy87@gmail.com.
    x

  2. Well said. I recently spoke at an event about this and I stated that no matter what anyone said, it wasn’t the right thing. There intentions were good but no one (except your spouse) knows exactly what you are feeling. People are too afraid to hear the true details of what it means. The other thing that is frustrating is people offering advise on how to parent a child with a CHD. It is a different world and I’m glad that others don’t have to live our reality but don’t give me advise on parenting my child when you don’t know the gravity of our circumstance. For example, I am so sick of hearing that exposing my child to sickness will help to strengthen his immune system. First of all – that isn’t how it works for viruses and the common cold. Next, the common cold could send my child’s O2 levels to dangerous lows and land him in the PICU – not something I’m willing to test out in the hopes that his immunity will be built up.

    Great reminder though that there reactions or comments are not ours. If you have any recommendations around whitty replies, I’m all ears :)

Speak Your Mind