"I got sick when I was 13 years old, and I'm 22 years old now, so it's been about a decade. I can't thank my doctors and all the people at St. Mark's Hospital enough."
Take me to St. Mark’s Hospital: I came back a new person
The Little family of South Ogden sat around the dinner table enjoying food and conversation when their young adult daughter, Marissa, collapsed.
“It was instantaneous. She fell over, tears started and she was holding her breath because of the dire pain,” said Nikki Little, Marissa’s mom.
Unfortunately, health issues weren’t new to Marissa. A long stretch of physical struggles started with pancreatitis when she was 13 years old and continued with a battery of painful illnesses for nearly a decade. In fact, just one year prior to this sudden onset of pain, Marissa underwent surgery to relieve a rare condition called Median Arcuate Ligament Syndrome (MALS); in which the artery that delivers blood to the stomach, liver and other organs becomes too tightly compressed by the median arcuate ligament.
“Less than one percent of people get a compression issue like MALS, but we later learned that chances are very high that if you have one compression issue, you’ll get a secondary compression issue,” Nikki said.
Darkness all around: Blacking out, trying to block the pain
For the next 11 months, Marissa’s health and quality of life spiraled downward. Her digestive system rejected food, liquid and medicine, so she received feeding tubes, IVs and home health care. The relentless and intense pain left Marissa in the fetal position, muscles clenched and bedbound. The only relief Marissa had during this dark time came from a monthly nerve block that would last just a few hours.
Then life became even more difficult when Marissa’s body began convulsing with seizures and fainting if she sat upright for longer than 20 seconds.
“I couldn’t sit her up to turn her or brush her teeth without her shaking, eyes rolling back and then passing out due to the pain. Everything kept getting worse. It took both my husband and I to care for her. Getting her in the car to a medical appointment was nearly impossible. Even going to the bathroom wasn’t easy. We put a commode next to the bed and her wheelchair in front of her so when she’d black out, at least the wheelchair would prevent a fall … Her face kept getting grayer and grayer … This was not living. She was slowly dying,” Nikki said.
A ray of light shines through: Rare diagnosis offers hope
A glimmer of light finally came when interventional radiologist, Dr. Rulon Hardman, conducted a venogram at Ogden Regional Medical Center. A venogram uses X-ray technology and an injected contrasting material to provide a view of how blood flows through the veins.
“I remember him coming out from that test, and he was beyond excited. He said, ‘I know what it is! It’s called Nutcracker Syndrome!’” Nikki said. “That was like heavens opening up and light shining through because at that point, everything was pretty dire.”
Nutcracker Syndrome is a condition that results in the left renal kidney vein being squeezed too tightly – as if being compressed like a nutcracker cracking a nut. Although extremely rare, complex and difficult to diagnose, with expert medical care, the phenomenon is treatable.
Lit up with life: St. Mark’s Hospital teams emit compassion, specialized skills
Marissa needed a renal autotransplant, meaning specialized surgeons would remove her impacted left kidney, correct the compression issue and then transplant the left kidney into a new position below her right kidney.
“I was choosing between two hospitals for this surgery, so I started asking people which hospital they’d go to, and many said St. Mark’s Hospital. Not only did St. Mark’s have the advanced robotic technology needed, but they had open availability,” Nikki said.
Once they chose St. Mark’s Hospital, the care they received consistently verified that they made the best choice. “We’ve been to so many hospitals in the past. I can’t even tell you the number of days we’ve spent in hospitals, but I can tell you that from the first day at St. Marks, everyone was so kind and made sure she was comfortable. I was impressed all along the way,” Nikki said.
Dr. Ivan Zendejas-Ruiz performed the surgery at St. Mark’s Hospital, and the results provided Marissa relief from the tormenting pain and hope for the future.
“When she woke from surgery I asked, ‘Do you feel any pain?’ and she said, ‘Not in my stomach!’” Nikki said. “At the post-op with Dr. Zendejas, I could tell he was smiling from ear-to-ear under the mask because his eyes were sparkling. This surgery was a leap of faith. We didn’t know if it would work, but it did.”
The next few weeks came with ups and downs, as complications reared and recovery slowly moved forward. Nikki drove the hour and a half route from home to the hospital regularly, feeling confident that her daughter was in compassionate, capable hands.
“They treat you like family and they become family,” Nikki said. “They’re the only ones I’ve trusted with my daughter without me being there. I don’t normally leave the hospital, but they made sure she had everything she needed and things I didn’t even know she needed. They took excellent care of her.”
Rebuilding days at St. Mark’s Hospital Acute Rehabilitation Center
After weeks in a hospital room, Marissa progressed to St. Mark’s Hospital’s Acute Rehabilitation Center to rebuild strength and skills.
“She had been bedbound for so long that she needed to relearn how to walk, brush her teeth while standing, do laundry and normal activities. The physical and occupational specialists at the rehab center watched her stats to ensure she wouldn’t faint; and if something did go wrong, we’d be in the hospital. That provided a huge sense of security,” Nikki said. “She was there for four weeks, and the teams became an extended part of our family.”
Marissa agreed and said the positive culture and people provided the perfect environment for rebuilding.
“Every single person cared. On my good and bad days, they cheered for me,” Marissa said. “This is the first hospital I’ve been at where it felt like every person was invested in my care. It made such a difference.”
Brighter than ever: Walking into the future
Marissa is back home, sitting around the dinner table with her family again. She recently packed up the hospital boxes full of medical supplies that previously lined her bedroom. The home looks and feels different now because Marissa feels much different.
“After going through such hard times, it’s like all the colors are brighter now. I’m brighter. I’m glowing because it’s pure happiness that my body is working and functioning. I can eat food! I can go to the bathroom on my own! I can walk! I can shower and wash my hair! Every day is literally the best day ever. It’s so cool! I got sick when I was 13 years old and I’m 22 years old now, so it’s been about a decade. I can’t thank my doctors and all the people at St. Mark’s Hospital enough. I came back a new person,” Marissa said.