Superior Mesenteric Artery Syndrome Awareness Day 2023

 

Jayde-Rhiannon's first Christmas was memorable. She was two months old, and we had been in our new home for all of five weeks. There was still much unpacking to do, and I decorated the best I could. Since I was not up to traipsing through a field, there was a Charlie Brown Christmas tree in the corner of our living room. However, none of that mattered. On Christmas Eve, our home overflowed with people carrying the title of aunt, uncle, mommom, pop-pop, grandmom, grandpop, and cousin. Jayde was dressed in the sweetest green velvet dress, resembling a human baby doll as she was passed from relative to relative. After the past year, all seemed right in the world.

In preparation for our joyous evening with our family, I timed Jayde's feeding so she would be good for the next four hours. The evening was perfect until it wasn't. Two hours into the festivities, Jayde threw up all over Chris. I didn't think her little body could hold so much fluid. She had never spit up before. Once we had her cleaned up we checked her temperature, but there was no fever. About six weeks later, the same occurrence happened.

Because Jayde teethed quite late, a softer diet had become the norm for her. She was consistently in the lowest percentile for her weight. Though I had the role of a concerned mother down to an art form, no doctor ever saw cause for alarm. In fact, the first time I heard, "It is better to have a thin child than one who is obese," I initially agreed with the phrase until I mulled over her pediatrician's words the following few days. 

Towards the end of elementary school, Jayde's vomiting episodes had become a frequent and regular event. When these events occurred, the two of us were up all night until Jayde's frail body could not take anymore. The two of us would then barricade in my bedroom and sleep all day. For over three years, Jayde lived off bananas, applesauce, yogurt, soup, and protein drinks. It was a great excuse to buy a ninja blender and food processor.

Before we found a doctor who did not ignore Jayde's symptoms or my pleas for help, I would hear the, "better to be thin," phrase from two more doctors. The final time I shook my head, internally calling the doctor a few choice names. At the time, I couldn't believe this was the norm for modern medicine in America or the general apathy I witnessed toward an obviously sick child. My child.  Now, having observed, participated in, and lived the journey with our precious daughter for twenty-one years, I cannot believe that Jayde's story is still a routine occurrence for far too many individuals and their families.

While Jayde's surgery saved her life, it is a bandaid. There is no cure for chronic SMAS.  Food does not always travel through the anastomosis created in surgery, causing blockages in the duodenum. The abdominal pain is still a constant presence. 

Superior Mesenteric Artery Syndrome is when the angle and distance between the superior mesenteric artery and the abdominal aorta fall below a threshold where they compress the duodenum. This compression causes nausea, vomiting, distention, burping, weight loss, malnutrition, and severe abdominal pain. For Jayde, and many others, SMAS is also accompanied by Nutcracker Syndrome. NCS is the compression of the left renal vein, which supplies blood flow to the left kidney and provides its own challenges.

The stark reality is .013% of the world's population has Superior Mesenteric Artery Syndrome, and one in three will lose the ultimate battle to this illness. Although .013% seems like a small number and one in three is only one, if someone you loved with every fiber of your being was part of that .013%, what would you do to ensure they were not the one in one in three?

This day is not a celebration. It is a day we honor those who courageously fought their battle but lost. It is a day to call for awareness and give hope to those still bravely fighting a war so rare that most physicians are oblivious to its existence. It is a day when the .013% are reminded that their lives and their fight matter. No matter how rare their illness is, it is still not too rare to care. 💜

#jrsjourney #SMAS #SMASyndrome #SuperiorMesentericArterySyndrome #smasawareness2023  #SMASwarrior #NotTooRareToCare #zebralife