DELICATE DIET: Ranching family adopts vegan lifestyle for son
FARGO -- As farmers and cattle ranchers, Val and Mark Wagner never expected to know the intricacies of a vegan diet.
However, they've had to learn that and much more to keep their youngest son alive. Eli Wagner, 2, has what's called Ornithine transcarbamylase (OTC) deficiency. Basically, his body can't break down protein properly. As a result, ammonia builds up in his blood, and that can lead to neurological problems and liver damage.
"It's a little hard to stomach when you're a livestock producer and you're raising a kid who might never be able to eat meat," said Mark Wagner, who lives on a farm outside of Monango, N.D., with his wife, Val, and four sons.
Eli is the youngest of the Wagners' boys. He was born weighing a healthy 9 pounds, 13 ounces, but he didn't grow as fast as his mother thought he should. He also had late-onset jaundice, which is a yellow coloring of the skin and eyes related to immature liver function. It took two weeks of phototherapy at home to improve.
At his two-month check-up, Eli weighed 11 pounds, 1 ounce. Over the following month, he gained only 4 ounces.
Babies typically gain an ounce a day during their first month and about one or two pounds a month until they're 6-months-old, according to pregnancy website, The Bump.
Eli and his parents spent three days in the hospital in Aberdeen, S.D., trying to figure out what was wrong. They were then sent to a specialist in Fargo for another few days of testing that produced no concrete diagnosis.
Val Wagner had been breastfeeding Eli, but when doctors suspected a lactose problem, she quit nursing him and fed him a specialized formula. By the time they realized her breast milk wasn't the issue, a combination of time without nursing and stress meant she was no longer producing milk.
Eli was switched to another specialized formula, to no avail.
"We just kept running into roadblocks," Val Wagner said. "Every time they'd do blood work, something else would come up.
In October 2009, when Eli was 6-months-old and had been diagnosed with failure to thrive, she called Mayo Clinic in Rochester, Minn.
"I knew what my children looked like at 6 months," she said. "They were roly-poly and chubby. I think my lightest weighed 26 pounds at 6 months old and here Eli was at 15 pounds struggling for every ounce we could get to stay on him."
He had a large head on a little body, skinny arms, and his skin sagged, Wagner said.
"It was like he was supposed to be bigger but he just wasn't," she said.
After a lot of trips to Rochester followed by more and more tests, doctors finally diagnosed Eli with OTC deficiency, a rare genetic disorder believed to occur in approximately one in every 80,000 people, according to the U.S. National Library of Medicine.
It causes ammonia to accumulate in the blood. Ammonia is formed when the body breaks down proteins, but it's toxic if the levels become too high, the Library of Medicine states on its website.
Babies with the disorder can experience seizures or go into a coma.
"We finally found what we think is the key and it's made an amazing difference," Wagner said.
Eli has been on a specialized diet for less than a year, but he's gained more weight in the past nine months than he had in the first year and a half of his life, Wagner said.
"He finally looks like the way I felt he should have looked to begin with," she said.
He's also talking more and his balance, which was off before, has normalized, she said.
With his diet under control, he acts like any other child his age, Mark Wagner said.
"Now that we've got his diet controlled, he runs, he plays, he smiles," he said. "What's kept me going through this is right now, he's a happy two-and-a-half year old little boy."
Had they not been so persistent, Val Wagner said she doesn't know if her son would be here today.
"Fifty percent of children who are diagnosed with OTC don't make it the first 72 hours of life," she said. "Of those, another 50 percent die before they turn 5."
But the specialized formulas the Wagners were feeding Eli already had the amino acids broken down, so he was getting what he needed even before doctors knew what was wrong with him.
There are a lot of complications that come with OTC because bodies are meant to have protein, Val Wagner said.
Eli is allowed to consume 11 grams of protein a day, and it doesn't take much for him to reach his limit. A cup of milk can contain 8 grams of protein, and protein can be found in things like bread and pasta. Even fruit snacks can contain protein.
That makes typically simple tasks like shopping and cooking difficult.
While Eli cannot eat meat, eggs, and dairy, Wagner can't buy him vegan products sold in stores, either because they often have added protein.
Wagner has three other boys to feed and they need regular servings of protein. She tries to make Eli's special meals as close to her other sons' meals as possible, but he's getting to an age where he notices the differences. He wants to be just like his brothers and doesn't yet understand why he can't eat the same things as them.
If he does get too much protein, it could cause seizures or even death, Wagner said.
The Wagners have tried to keep life as normal as possible for their other sons. The boys are involved in sports and other school activities, and whenever their parents have to take Eli to the hospital, they stay with their grandparents, who live nearby.
While Eli is showing significant improvement on his protein-restricted diet, Mark Wagner is still hopeful his diagnosis could change, especially since doctors couldn't find a genetic marker for OTC in Eli.
"That's not saying he doesn't have it, but they weren't 100 percent certain," he said. "OTC is very, very serious. He's definitely going to have a tough time living a normal life."
The article is from The Forum of Fargo-Moorhead. The Forum and the Herald are Forum Communications Co. newspapers.