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 and it went undetected for an entire month. She spent a month with us at home before she got sick one night and spit up some blood. We took her into one hospital and was transported to another where she received her diagnosis. It was then that she fell unresponsive in the ambulance and taken back to the hospital was she was placed on an ECMO machine. Then she was 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 was able to come off ECMO and was almost out of the woods. Leia had a surgery before her OHS on her abdomen to watch her intestines and movements to see if anything may have suffered any damaged from CPR or from how long she was unresponsive and a stent was placed. 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 is it’s a club that NO ONE wants to join but it’s a blessing in disguise. There’s 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.. heck, 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.
WE are CHD STRONG!