Seanna’s SMAS Journey
Seanna’s Journey to Life 2.0
In January 2022, our world changed forever. Seanna and her brother both had COVID-19, but while he recovered quickly, something was different with Seanna. A month later, she started having unbearable stabbing pain in her abdomen. At first, we thought it was just a lingering virus, but as the days turned into weeks and then months, it became clear something was very, very wrong.
Seanna’s Story
A Long Road to Answers
We spent the next two years searching for answers, going from doctor to doctor, desperate to understand why our once vibrant, energetic daughter could barely eat without pain. We watched her waste away, struggling to hold onto weight, her body growing weaker by the day. Test after test, misdiagnosis after misdiagnosis and it felt endless.
Finally, after countless scans and specialist consultations, we had an answer: Superior Mesenteric Artery Syndrome (SMAS). A rare, life-threatening condition where her small intestine was being crushed between two arteries, preventing food from passing through properly. It was a relief to finally have a name for what was happening, but it was terrifying to know how serious it was. She then went through 2 Duodenojejunostomy Surgeries that never relieved her of her pain.
The Surgery That Changed Everything
By January 2024, it was clear that a new type of surgery was the only way forward. On July 23, 2024, Seanna underwent the Alvear procedure, a specialized surgery where Dr. Domingo Alvear himself guided Pediatric Surgeon Dr. Andre Theron in performing his technique. It was the hardest day of our lives, but also the day that gave Seanna her life back.
And it worked. Seanna is cured from SMAS. She ate again without that stabbing pain. She could nourish her body. She was no longer starving. We will forever be grateful for the doctors who made this possible, and for every person who supported us through that fight.
But alas our Journey is not over
As much as we want this to be the end of the story, it isn’t. While SMAS is behind us, other abdominal vascular compression syndromes are still affecting Seanna’s health.
She has Nutcracker Syndrome (NCS) where her left renal vein is severely compressed by the Abdominal Aorta and Superior Mesenteric Artery, causing relentless pain, blood in her urine, and the inevitable stress on her kidneys. We are closely managing her symptoms as best we can with more surgery on the cards.
Holding Onto Hope
Watching your child suffer and knowing you can’t just fix it is the hardest thing in the world. But if there is one thing Seanna has taught us all, it is resilience. She keeps going. She keeps smiling. She keeps believing that there is still joy ahead.
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