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Leia's Heart

by Naomi Schwenk |

"You are your child’s voice until they can learn to use their own—advocate for your child."

To celebrate World Heart Day, the mother of one of our Abilitee Ambassadors, Leia, wrote the following about their life and experience as a Heart Warrior.

Leia was born with a congenital heart defect (CHD),and it went undetected for an entire month. She spent a month with us at home before she got sick one night and spat up some blood. We took her into one hospital, and she was transported to another where we received her diagnosis. It was then in the ambulance when she fell unresponsive and was taken back to the hospital where she was placed on an ECMO machine. Then moved to Children’s Dallas, where she would stay for the remainder of the heart journey.

Leia was on ECMO for two weeks before moving forward with her open heart surgery. On the day of Leia’s repair, she came off ECMO and was almost out of the woods. Leia had a surgery before her Open Heart Surgery on her abdomen to watch her intestines and movements to see if anything may have suffered any damage from CPR or how long she was unresponsive. The surgeon also placed a stent. She had her intestines in a silo to watch all movement and then had that closed up. Leia has been through more than anyone could ever imagine, and to this day, we still can’t believe everything that happened.

Leia has gone through speech therapy, occupational therapy, & physical therapy. She has had home nursing, a feeding tube, & even has paralysis of the right vocal cord. You would never know looking at her, but she is a warrior. A miracle. A fighter. A lover. My words to those new to the CHD world are it’s a club that NO ONE wants to join, but it’s a blessing in disguise. There are people out there that know exactly what you’re going through. Yes, there are good and bad days and even days where you question EVERY SINGLE THING, especially yourself, but don’t give up the fight. You are your child’s voice until they can learn to use their own—advocate for your child.

Live for your child and fight on because they are looking up to you just as much as you’re looking up to them. This is the worst time of your life, but THERE IS A LIGHT AT THE END. There will be a day where your child will no longer be hooked up to machines. There will be a day where you can hold your child without worrying about tugging on cords. There will be a day where you will no longer hear the machines, nurses, techs check, even the squeaks of the recliners! Just hold on and fight the fight. We will make it through this together.

WE are 1 in a 100.



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