Patient Spotlight: Aiden Zumwalt
“We do not hear the can’ts, the don’ts, or the won’ts”
By Emily Chandler
Edited by Becky Lange
Aiden Zumwalt’s smile and sweet presence has a way of commanding a room. Recently, Aiden and I were able to spend some time together and in that short period of time, Aiden opened my eyes to so much. As I sat and looked down at the little boy in my arms our eyes locked, and I realized that even when doctors and specialists gave up hope on Aiden, God has not. My eyes welled up with tears as I tried to recap to co-workers what I experienced during my time spent with this boy. You see, Aiden didn’t have to speak a word or physically show me anything. All he had to do was lie in my arms and breathe. With these simple acts he was already proving so many people wrong. This little boy is a living, breathing miracle. Even though the outside world may look at him and see him as helpless, Aiden consistently proves everyone wrong.
One of Aiden’s biggest advocates, his amazing Mom, tells his story:
1. Tell us Aiden’s story:
Aiden Douglas Zumwalt was born on Dec 31, 2008 and pronounced to be a seemingly healthy baby boy. However, 23 hours later he became blue and cyanotic, placed on a ventilator and transferred to UK Children’s hospital where he was diagnosed with Heterotaxy, a rare condition which includes multiple heart and abdominal defects. He underwent his first open heart surgery at one week of age where surgeons placed a central shunt to allow him time to grow and get stronger for the major repair of his heart defect. The following day while removing him from the ventilator, he suffered respiratory and cardiac arrest. After 25 minutes of CPR he was placed on ECMO (heart and lung bypass) for the next 96 hours, giving his heart a chance to rest and recover. Unfortunately, upon removal of ECMO he suffered a small stroke.
Aiden has overcome some of the biggest obstacles a little one could endure in such a fragile state. Unfortunately Aiden suffered two cardiac arrests prior to his biventricular repair at four months of age, and his condition required his being placed on ECMO in order to survive. With this life saving measure come great risks, and Aiden’s brain suffered the consequences, including the stroke from his first ECMO run and a diffuse anoxic injury from the second ECMO run.
We were given devastating news the night prior to his 12-hour open heart biventricular repair surgery. We were told that as a result of Aiden’s neurological insults, he would never walk or talk, and was most likely deaf and blind. At one point I turned to the physician who was delivering this horrific and asked, “Have you ever seen a child with these types of injuries overcome these deficits you have declared our child to have?” The neurologist nodded his head “yes” and muddled something like “I suppose” under his breath. I quickly responded, “That is all I need to know.” I think this exactly sums up how our family has decided to handle the obstacles our son has been given. We do not hear the can’ts, the don’ts, or the won’ts. We choose not to focus on the what-ifs or should-have-beens. We live in the moment, taking each day as it comes and cherishing the fact that our son fought with unbelievable strength to be in this world with us and we as his parents will stop at nothing to give him the happiest and healthiest life possible. His smile lights up any room, touches everyone he meets, and can warm anyone’s soul!
2. Why did you choose to come to APT?
We chose to bring Aiden to APT for therapy because we have a wonderful friend who works here and she knew the struggles we were having trying to get help with Aiden’s feeding, and his learning to eat by mouth again. She reached out to us and we are forever grateful for her encouragement that allowed us to make the journey to Shelbyville twice a week.
3. How have you seen improvements in Aiden since he started seeing Renea, Holley, Ginette and Erin?
The most progress Aiden has made in his 4 years on this earth has without a doubt been within the past 18 months, since we started seeing Renea, Ginette, Erin and Holley. We worked for months after Aiden’s epilepsy diagnosis to try to get Aiden to eat by mouth again, but with no success. Within 2 months of seeing Renea (SLP) at APT, he was eating baby foods without difficulty and progressing to soft table foods. It was beyond thrilling to us and Aiden to not have him connected to a feeding pump for countless hours a day. Aiden has made so many more improvements along with his feeding gains.
Erin (PT) has worked tirelessly to help Aiden sit unassisted and bear weight. Now he is even beginning to take steps unassisted! APT recently purchased a Lite Gait apparatus that allows Aiden to take steps on a treadmill and helps to train his brain to correctly fire the muscles in his legs. It is fills us with joy to see how much he loves to walk. He even gets a little feisty when we stop to take a break; he wants to keep moving. He’s definitely got spunk! It’s very fitting that we chose the name Aiden, as it means “fiery one”.
Ginette (OT) focuses on Aiden’s upper extremities and he has virtually gone from no purposeful use of his hands to coloring with markers, playing with the iPad, using switch activation, and bringing candy to his mouth. Erin and Ginette have both helped Aiden make huge strides in his progress and development. Recently we were excited to have Holley (SLP) join Aiden’s team. She works to progress his feeding capabilities and communication. Renea has trialed several augmentative devices with Aiden, and we look forward to both of Aiden’s SLPs helping him “find his voice.”
4. What has been your brightest moment along Aiden’s journey?
We cherish every day with our son. We know all too well just how precious life is and how in the blink of an eye, everything you know and love can change. We appreciate every second we have with Aiden and relish the moment every time he overcomes an obstacle. We look forward to the day that Aiden may be able to WALK up to that certain physician who delivered such heartbreaking news to us on the eve of his heart repair and COMMUNICATE to him that he is neither DEAF nor BLIND! 🙂
5. What advice would you give to other parents who are in similar situations? Things to do? Things to avoid?
Take each day as it comes, one day at a time. Some days it may be one hour at a time. Focus on the positive; what your child brings to this world instead of what they may or may not be able to do. Give your child as many opportunities as you can to help your child flourish and overcome the obstacles that have been bestowed upon him or her.
Aiden’s therapists have been so blessed to be able to work with him. Below, his therapists tell us how Aiden has impacted their lives:
Ginette Allen (OT) says: “I’ve had the pleasure of working with Aiden and his family for over a year. Every time I walk into the room and start talking to him, a smile immediately plasters his face! Sometimes he’ll raise his eyebrows up and down as well! Since I started seeing him, he has made some exciting progress. Aiden’s now able to use a spoon to eat some yummy candy, reach to activate switches in order to tell me which toy he wants to play with, and he can play with the iPad. His favorite app is Tap Tap Baby, and he grins from ear to ear when he hears the opening music. Having the opportunity to work and play with Aiden is a highlight of my week!”
Erin Abell (PT) adds: “Over the last year or so, with help from his parents and his fabulous team of therapists, Aiden has made incredible gains! We have all agreed that Aiden needs to be pushed hard, and because of that push he is enjoying activities that were previously non-preferred. On any given Wednesday afternoon you can find him smiling in the Lite Gait, just walking away. I love being a part of and sharing in this progress with Aiden and his family.”
Holley Bolin (ST) agreed that Aiden has a great smile and noted that he loves snuggling.
Renea Sageser (ST) says: “When Aiden came to see us a year and a half ago, he was unable to eat. He is now able to eat different textures, as well as toddler food! Aiden is such a joy and inspiration in my week. I am honored that his parents drive from Lexington twice a week because of the faith they have in APT and his team. Aiden has such a funny personality and is so loving. He also adores Elmo!”
Aiden’s powerful story testifies that at 4 years old, Aiden is stronger than many adults. My day is made when I talk to Aiden and see his face light up with that famous smile. I hope that through this story your life will be richly blessed, too. Aiden has a special purpose on this earth and he is living it out every day. Sometimes we simply need to realize that even the smallest-sized miracles can leave the biggest impact.
To learn more about Aiden, visit his website: www.aidensangelsinc.org