Local toddler awaits life-changing intestinal transplant
Published 2:02 pm Tuesday, February 15, 2022
LAPLACE — Tricia LeBoeuf-Cancienne of Paulina wants nothing more than for both of her boys to experience a traditional South Louisiana childhood filled with Cajun food, pool parties and long summer days at the ballpark.
Those dreams lie on the other end of an uphill battle for 2-year-old Anniston Cancienne, who is currently awaiting a life-changing intestinal transplant. Thankfully, the River Parishes community has Anniston’s back every step of the way.
When the Cancienne family welcomed twins Anniston and Greyson in early 2020, they never expected that one of their boys would be diagnosed with MMIHS, a rare condition with fewer than 300 recorded cases worldwide.
Anniston was born without smooth muscle capability, meaning his body is unable to absorb nutrients and push food through the digestive tract. Unable to urinate on his own, Anniston needs a catheter four times a day. He wears an ileostomy to collect gastric contents due to his colon being too small to function, and he relies on a broviac central line that pumps nutrients straight to his heart and into his blood stream.
If it weren’t for the wires attached to him, no one would guess than Anniston has endured 16 hospital stays and eight medical procedures. He’s an active little boy with a quickly growing vocabulary and a love for Moana and Mickey Mouse.
Cognitively, he’s developing normally right alongside his brother, which makes this stage of his journey even more heart-wrenching.
“His brain functions fine. As he’s getting older, that’s becoming a double-edged sword. He tries to pull off his ileostomy bag because he knows and feels that it’s not normal to have this. He’s always asking where Greyson’s tubes are. He’s extremely aware that he is different,” LeBoeuf-Cancienne said. “We’re hoping this transplant will give him a better quality of life. Hopefully, one day, we can be a be a family that is able to sit at a restaurant or go on family vacations without all these supplies or worrying about where the nearest hospital is located.”
Anniston’s condition went unnoticed through pregnancy, as his twin’s amniotic fluid compensated for irregularities that might have been spotted on ultrasound. Even after his birth, it took 48 hours for doctors to diagnose Anniston because of all of the unknowns surrounding MMIHS.
Two years later, caring for Anniston still involves a lot of learning by experience, according to his daytime RN Lauren Gilchrist.
“Everything that you would normally do is kind of different,” Gilchrist said. “When I ask doctors for parameters, they are kind of unsure, too. We do the best we can.”
Anniston was able to have small bites of food during family dinner until a health scare this past November. The Cancienne family was traveling back from a Tennessee vacation when Anniston fell ill. His condition rapidly declined from Friday to Monday, when he was brought to the ER with sepsis. Anniston spent three days in the PICU, his stomach growing bigger and bigger. His aunt advocated for him to have a CT scan to get to the heart of the issue.
The CT scan showed Anniston’s intestines were perforated and wrapped around a major blood vessel. That led to an emergency surgery, where doctors realized Anniston’s intestines were necrotic.
Anniston currently has only about four inches of intestines, which means he can no longer eat or receive nutrients through his G-tube.
The broviac central line that delivers nutrients to Anniston’s heart comes with its own host of risks. Anniston can’t take a bath or get submerged in water. He’s vulnerable to central line infections outside of a sterile environment, and even sweating is risky due to the risk of a yeast infection.
The intestinal transplant, while offering the hope of improved quality of life, also runs the risk of severe complications.
“We’re going to trade the risks of the broviac for the risk of rejection with the intestinal transplant. We still have a huge uphill battle. We’re just hoping that his body accepts the intestines and that he can do what children want to do in Southeast Louisiana – eat, go outside, swim, play baseball,” LeBoeuf-Cancienne said.
Anniston will have an evaluation for the intestinal transplant on March 7.
Since the transplant cannot be done in Louisiana, the Cancienne family will have to temporarily relocate to either New York or Nebraska in order for Anniston to undergo surgery.
While doctors initially believed he wouldn’t live to see his first birthday, Anniston has been a trooper thanks to the support of his large family, his medical team, and a network of people praying for him daily.
“We’ve been part of an amazing community. Everyone rallies around Anniston,” LeBoeuf-Cancienne said. “Some people say I don’t even know how to pray, but I know I’m praying for Anniston. I do believe that he is a child of God and there is a plan for Anniston. We could not have done this without the community’s love and support. It’s a really humbling thing to see.”
Those who wish to help with Anniston’s medical expenses can enter The 3-Ell’s Gift Basket Raffle for a chance to win a family fun night, spa day or home décor. The drawing will be held on May 4, and the cost is one chance for $5 or six chances for $20. To enter, Venmo @Lisa-Berthelot-2
A GoFundMe has been set up at www.gofundme.com/f/help-anniston-with-his-organ-transplants.