The Zistel Family
Every heart has a story, this is mine.
Hi, I’m Zander. My parents, Matt and Ashley Zistel married and settled down in The Dalles, Oregon in June of 2012. My dad has been working for the Oregon State Police for 15 years, and my mom stays at home to raise my siblings and I. She is always taking us to community events and local small businesses. They welcomed my brother, Zeke in 2016, my sister, Zoey in 2017, and completed their family with me in December of 2021.
My journey began while I was still in the womb. At my 20 week anatomy scan (in September), it was discovered that I had Dextro Transposition of the Great Arteries (D-TGA). This is a rare congenital heart defect in which the two main arteries in the heart aren’t in their original place (transposed). In this situation, my un-oxygenated blood goes to the body instead of the lungs to pick the oxygen I need to sustain life. Basically, I can’t survive outside the womb with this condition. After several fetal echocardiograms and doctor visits, it was planned for me to have open heart surgery a week after birth to correct my defect.
Unfortunately, at 28 weeks gestation, plans quickly changed when my mom went in for a routine OB appointment. It was discovered she had preeclampsia with severe features. She was immediately life-flighted to OHSU for monitoring. I know she was scared because while her pressures were rising mine were dropping. Due to the complexity of pregnancy, I was born via emergency C-Section on December 17th, 2021.
At just 3 pounds and 31 weeks, my odds were already stacked against me. Due to my itty bitty size, my open-heart surgery was postponed until I could gain enough weight to be operated on. Upon birth, I was immediately intubated and placed in the NICU for monitoring and respiratory support, not in my mommy’s arms like I had hoped. As I attempted to gain weight, I had some setbacks. I experienced numerous complications, and was treated for several infections. In January I had my very first procedure. I guess it went well because everyone clapped when I returned to the NICU. I was so loved.
In February of 2022, I threw a curveball at my sweet Drs. and I almost didn’t survive. They didn’t love that! While it still remains unclear as to why, my oxygen saturations were persistently dropping to the 60’s and even mid to low 30’s. Despite all of the doctor’s attempts, efforts, and ideas, I went into extreme respiratory failure. I was urgently transferred down to the PICU (pediatric floor, yay new friends) to be placed on ECMO (life support for heart and lungs) as a last resort to keep me alive. By nothing short of a miracle, and thousands (and I mean thousands) of prayers, I became stable enough to go forward with my operation two weeks later. My arterial switch happened on February 15th of 2022. The operation and recovery went better than expected, surprising both my surgical and cardiology teams. I was on my way to a full recovery, and able to come home to meet my siblings a month later.
Although there were several adjustments to home life as I still required medical attention, I was thriving and loving every minute of it. At just 7lbs I was still the size of a newborn so my siblings carried me everywhere they went. I was the king of the castle and I ruled my peasants!
Things changed in March of 2023, when mom discovered behaviors that weren’t my norm, and requested an urgent echocardiogram. While there, my doctors found that I had significantly high pressures in my heart and lungs. I underwent a cardiac catheterization procedure to measure the exact pressures in my heart. This revealed that I had severe Pulmonary Arterial Hypertension (PAH). PAH is high blood pressure in the blood vessels of the lungs, specifically the pulmonary arteries. When pulmonary arterial pressure rises, blood backs up into the heart causing right sided heart failure.
Upon returning from the Cath Lab, while everyone was deliberating and coming up with a new plan, My body had enough and started to decline. I quickly had worsening saturations, low blood pressure, and progressive lung impairment. I had two separate codes in which revival was successful. However, the doctors were concerned I wouldn’t make it through another event.. The decision was made to place me on ECMO in the final attempt to get me stable. I was supported on ECMO while medications were given to treat pulmonary hypertension.
Several meetings and a new team of specialists sat my family down to discuss my diagnosis. In those meetings, my family learned that had I not been admitted when I was, I would have died at home within a month. God knew better and sent my mommy whispers, I love that she listens.
Currently I’m home, and I’m on a triple therapy management plan for my PAH. I require medication multiple times a day. Including a subcutaneous site. (an annoying tube that pumps a special medicine to my body. It does come with a cute fanny pack though). My mommy and I both cry when I require a new site. I also see my cardiology team every few months and have established a great relationship with them.
My diagnosis is ongoing, and my future remains unknown. I will need medical treatment for the remainder of my life. We are hopeful and prayerful that it’s a long one. To make it to my adult years would be a true miracle. This talk makes my mommy cry so to offset the devastating reality, I am always on my best behavior! I am the cutest patootie’s little boy around. You’ll always find me laughing, smiling and demanding food. I love to giggle and run around and I’m perfectly content digging in the dirt. If you look at me, I probably look like any other one and a half year old boy.
My journey has been hard on everyone in my family. I’ve spent so much time getting prodded, poked, and familiar with my medical team. My parents have to worry, and take time off work or away from home and my siblings. My brother and sister don’t get to see me or my parents when I am hospitalized. Although my journey isn’t over, I am grateful to know that I have the best support system out there. Not everyone gets to say that. It’s through hearts like yours that mine gets to continue to thrive.