She was given a 1 in 2500 chance of making it to birth. We were told halfway through my first pregnancy that “the best case scenario would be her making it full term but requiring open heart surgery.”As long as her heart was beating, we were gonna fight for our girl. Like the miracle that she is, our baby girl was born full term and transferred from Cedars to CHLA at one day old via ambulance. I was able to avoid a c-section so I could be discharged to go with my baby.
She underwent open heart surgery at three days old. Three hours after that, she flatlined.. three times. In case anyone wants to know what rock bottom feels like… this was it. Nurses and doctors revived her each time. For three days, her chest stayed open until the swelling went down, covered by a thin transparent gauze type of tape. I watched my daughter’s beating heart for three days. She couldn’t eat for the first week of her life (just IV fluids).
She came home at 14 days old. To date, she has not needed another heart surgery. (this is where you knock on wood)This month, she turns 11 years old.So when you hear Tommy and I say that our baby girl is “the strongest person we know” …well now you know. When I cry over the simplest things and panic and blow things out of proportion, well you now know why. That day…that rock bottom, that feeling of your child flatlining in front of you… it changes you for life. It makes you a bit more anxious (okay a lot more), it makes you feel like the other shoe will drop at anytime, it makes you worry a lot.
But it also makes you so very grateful for life and the precious gift it is. It makes you care and love the people in your life that much deeper. It humbles you, makes you more understanding and gives you tremendous perspective on life.1 in 100 babies are born with Congenital Heart Defects. That’s a lot more common than you think. It’s important to raise awareness and funds for these tiny heart warriors Because “thou she be but little, she is fierce.”
-Lucy Riles, Life of Mom founder