By Curtis Mar
The medical marvel of anesthesia was demonstrated for the first time 178 years ago at Massachusetts General Hospital. That day is commemorated today by World Anesthesia Day. In the rare disease community, of which half of patients are children, pediatric anesthesia is particularly important.
Pediatric anesthesia holds personal significance for me, as I’ve undergone more surgeries in the first few years of life than most people experience in their lifetime due to my diagnosis of VACTERL Syndrome at birth. This rare condition is diagnosed by having at least three of the following abnormalities: vertebral defects, anal atresia, cardiac abnormalities, tracheoesophageal fistula, renal anomalies, and limb abnormalities, often leading to significant disabilities. However, thanks to exceptional pediatric care and multiple surgeries, I’ve been fortunate to live a normal life.
I remember opening my eyes to a blurred ceiling as I came to from the slumber of anesthesia. I blinked myself into focus and felt my blood pumping through my veins as my lungs breathed in the distilled hospital air. I was still shaking, yet couldn’t help but think, another one down. I felt gratitude that all I had to do was trust the anesthesiologist and physicians and close my eyes. Thanks to the quality of care received, I always woke up to my concerned mother by my side and an attentive physician.
Spending much of my childhood in hospitals, I saw firsthand how crucial it was to ensure a safe surgical experience for children, particularly those with complex conditions similar to mine. Now, as a resident physician, I’m driven by a desire to bridge the gap in research on pediatric anesthesia for children with rare diseases, a field that is sorely lacking in evidence and data. This gap in knowledge needs more attention to improve outcomes for children facing high-risk surgeries.
Anesthesia for pediatric patients is particularly challenging when rare diseases are involved. Conditions like VACTERL Syndrome can affect multiple organ systems, such as the heart, lungs, and kidneys, making anesthesia far more complicated. Pediatric anesthesia is not simply a scaled-down version of adult anesthesia; it requires a deep understanding of a child’s developmental stage, physiology, and the specific challenges they may face. For children with rare diseases, these challenges are magnified, requiring individualized and innovative anesthetic approaches.
Some of the major complications of pediatric anesthesia are the rapid hemodynamic changes that can occur after giving amnestic, analgesic, and paralytic medications. These medications can cause major changes in blood pressure, heart rate and oxygen saturation. If blood pressure decreases to critical levels, we worry about blood getting to vital organs such as the brain, while too high of a blood pressure creates risk of hemorrhage or vessel aneurysm. These risks are amplified when rare diseases change the pharmacodynamics and pharmacokinetics of drug-drug interactions. For example, in some disease states certain medications are metabolized at different rates than expected, resulting in atypical course during or even after surgery. Anesthesiologists must be prepared for any acute or subacute situation.
The complexity of these cases and challenges is why I am so passionate about advocating for more research in this area. My personal journey has shown me how critical it is to address the specific needs of children with rare conditions. Through sharing my story and raising awareness, I hope to inspire greater efforts to develop safer, more effective anesthetic strategies for pediatric patients with multi-system challenges and contribute to a broader understanding of how to safely manage anesthesia in medically complex children. By improving the knowledge base, we can give these children the best possible outcomes and a chance at a healthier, more fulfilling life.
My ultimate goal is to return to the Sacramento, California hospitals where I received most of my own care. I want to give back to the community I call home. I have immense gratitude for the pediatricians and surgeons who treated me, and I aspire to follow in their footsteps, ensuring that future generations of children with rare diseases receive the care they deserve. Children are our future; they deserve our very best, and it’s our responsibility as health care professionals to make sure they get it.
Curtis Mar, DO, is a Resident Physician at Kaweah Health in Visalia California.
