What Heart Parents Want: Hope

By: Lori Jones

It’s been 13 years now since I heard a doctor say, "there’s something wrong with your baby’s heart", but I still remember every single thing and every single feeling from that day.

I remember my OB GYN’s smile dissolve into panic. I remember him frantically pressing his heart monitor across my belly, trying to find her heartbeat, and then yanking a sonogram machine into the room. I remember when he said, "her heart rate is unusually low. We need to get you to the hospital."

At the hospital, I remember gripping the crisp white sheets, watching the doctors’ concerned looks, and hearing every word of the diagnosis. Digesting and processing it all, and then fearing for her future.

My baby girl had been given a clean bill of health at her sonogram a few weeks prior, so how could this be? How could her heart not be functioning now?

I remember thinking, I can’t lose her. I can’t lose my baby.

I remember asking, Can she survive this? What can we do?

I remember a rush of relief spilling all over me when he said, "She’ll need a pacemaker after birth, but yes, there’s hope."

Hope is the word we all want to hear.

After serving as a chapter leader for The Children’s Heart Foundation for over 6 years, I’ve met so many heart moms and dads from all over the country and even around the world. When a young parent comes to us and wants to raise money for research, we always sense their urgency to raise the money now and get those projects funded tomorrow. There’s a desire for hope and to create a future that looks promising for our kids.

It’s what attracted me to the mission of CHF; they were manufacturing hope. There are many great organizations out there who are tending to and caring for the immediate needs for parents while they’re in the hospital or whatever their needs are today. Those organizations are so important. But CHF is focusing on what comes tomorrow. They’re funding projects to make sure surgical results keep improving, survival rates keep increasing, and making sure these kids are not just surviving their surgeries, but that they’re thriving in the future.

Research is what changed a parent from hearing, "there’s nothing we can do for your child", to "we have a plan for your child."

And, yes, there’s hope.

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