FAQ

So glad you've found my page!  I remember being a newly diagnosed HeartMama and reading the awful statistics online.  Discouraged was our status for quite a while.

But, please know there is extreme hope! A CHD (Congenital Heart Defect) is no longer a death sentence! 

Here is a list of steps that I recommend all heart families do to prepare:

1. Find Support - Heart families have a fierce bond and us mamas are a close knit bunch.  I go to a monthly support group with Mended Little Hearts of Tulsa, but there are other groups depending on your state.  Don't be shy about going to these meetings - there are families (like mine!) who want to help you and their insider been-there-done-that advice is priceless.

2. Facility - Select a facility in your region who does your surgery the best!  The more experienced the surgeon and support staff, the better.  Also, you need to feel comfortable with the staff and location.  We chose a hospital 10 hours away from home - and it's been worth it. 

3. Research - Do your homework.  As a rule, I tell new heart parents that YOU are your child's advocate.  If you don't like something, be it a process, a nurse, etc. speak up!  YOU know your child better than any trained doctor does. **This is the hardest lesson to learn, but in my experience, is learned quickly.

4. Prepare - If you are far from home you will need lodging.  Many areas have Ronald McDonald House facilities or even parent rooms at the hospital.  (This is where it pays to know the local heart families who can give you insider tips!) Let friends and family know that heart babies are pretty much in isolation to the public.  Feelings will get hurt, but visitors with colds, coughs and other little kids can't be near.  It's too risky.

5. Relax, Enjoy the pregnancy and Pray - The one thing that has kept me sane is living day to day.  I know everything has been planned and that my miracle boy is always in the Lord's hands.  That is the best peace to have.



Feel free to email me at amynschroeder@gmail.com for more information.  I've met some of my favorite heart families via my website!