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Having a Child with CHD: What we wish you knew

I asked a Group of Heart Moms (and Dads) one Question. The Responses were honest, relatable and will hopefully help you understand a little more about where we come from and what we go through on a daily basis. There were a lot more responses, because it hits home to these Parents, but I couldn’t share them all, because if I did, I know I would lose you which I don’t want because this matters.

What is one thing you wish people understood about having a child with CHD/your child with CHD?

1. “That they aren’t fixed and that lifetime follow-up is required. Yes, he is fine now but tomorrow may be a different story.” – Paula P.

2 “That they will never be “ok” or “fixed” ” -Jaiden C.

3. “That he is repaired, but will always have a broken heart. And just because he “looks” fine, it doesn’t mean he is.” -Sarah S.

4. “”Repaired” doesn’t mean “fixed”. We don’t just go to cardiology appointments every 6 months (9 months as of our last appt!) for fun.” -Lorissa D.

5.  “I wish people realized that when they say “but he’s ok now”, it discounts the trauma and difficult times we have faced (and will face) as a result of his CHD.” -Trinela D.

6. “That we know they look healthy on the outside!” -Debbie W.

7. “That a common cold or any type of infectious disease for that matter can be deadly! Keep your sick kids at home!!” -Anita D.

8. “That even if you know a kid who has ___ issue (delayed speach, delayed milestones) our kids are different and their therapeutic intervention IS needed” -Amy M.

9. “That every birthday is a big deal!” -Patrisha V.

10. “Please treat them like a regular kid. With an opened mind.” -Shannen H.

11. “There is never a moment when we aren’t worrying about something that could go wrong or might go wrong” -Natasha L.

12. “My son has CHD, it doesn’t have him!!! He is soo much more, don’t let his condition define him!!!” -Jessie H.

13. “It’s never over.” -Rebecca J.

14. “As a parent of a child with CHD, I worry about if there will be a tomorrow. Even though my daughter is repaired for now, I worry what could possibly happen. I worry about the unknown. I find myself staring into my daughter’s eyes and hoping I can keep her here forever and take away all of her pain. I wish people knew how hard it is to watch your child constantly have tests, get blood drawn, being poked and prodded regularly.” -Stephanie S.

15. “That although he looks ok, doesn’t mean he’s fixed. There is a time bomb in my child’s chest and I live every day wondering if it will go off. We try to live normally but there is always that wonder if something will happen today, if we can actually follow through with plans we’ve made and if someone else’s choice will put my kid in hospital.” -Samantha D.

16. “That I will never get the image of my baby post-op out of my head.” -Stephanie A.

17. “That the fight is never over and every moment is a blessing. Even when they look so good they are still fighting inside and as parents we are fighting along beside them.” -Tara P.

18. “It’s the scariest thing you’ve ever encountered. Handing your baby over to a stranger, knowing they will stop his tiny Heart. It’s something you never forget. There is also an incredible Family behind it, the worst but best Family to ever join.” -Sandra 

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