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By Daniella Gray
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A family from Ontario, Canada, will never be the same after their once healthy baby was diagnosed with a rare condition, leaving him dependent on life-sustaining medical care.
Just eight weeks after welcoming her son, Levi, 29-year-old Jenny Wilson was sitting on her couch breastfeeding and looking forward to a quiet day ahead.
Around noon, she began noticing subtle changes in her baby's behavior. He seemed unusually tired and was drinking less milk than normal.
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Whenever she put him down to sleep, he woke up crying.
"He was only eight weeks old though, so it’s hard to tell when somebody is acting unusual when they’ve only been around for eight weeks and they can’t quite communicate," Jenny told Newsweek.
At first, Jenny, who is also mom to a 5-year-old daughter with partner Logan Cook, suspected a minor digestive issue.
Levi vomited a small amount of milk and began making grunting noises. When she checked him for a fever, she found that he, in fact, seemed to be getting colder.
As the day went on, his symptoms worsened.
"I started to notice... that his stomach felt hard," Jenny explained. "I thought... I must just be seeing things. I’ve never really squished his belly before. Was it hard or was I just imagining this?"
Levi became increasingly distressed, and then he turned pale.
Although he appeared peaceful once he was placed in his car seat, Jenny followed her instincts and took him to the hospital.
"I said to my mom, 'I feel silly bringing him in because it seems like there’s nothing wrong with him, but I would rather someone tell me there’s nothing wrong than make the mistake of not bringing him in.'"
Doctors soon discovered Levi had suffered a midgut volvulus, a medical emergency in which the intestine twists around itself, cutting off its blood supply.
The condition is often linked to intestinal malrotation, a congenital abnormality in which the intestines do not develop in their normal position.
What followed was every parent's nightmare.
"When he first went in for surgery, they explained that it was very high risk and that we needed to come to terms," Jenny said. "My mind just went blank. This isn't happening. This must be a vivid nightmare that I’ll wake up from."
Surgeons performed three emergency operations over several days, attempting to save as much of Levi's intestine as possible.
The day before Mother's Day, they delivered devastating news.
"They finished his third surgery and explained to us that 90 percent have been removed," Jenny explained. "I felt like at that point it still wasn’t real."
Doctors later told the family Levi would need additional surgeries, including reconnecting his remaining intestine to his colon.
After the operations, Jenny faced another emotional blow: being told she would never be able to breastfeed her son again because of his condition.
"Saying that sentence still makes me cry to this day," Jenny said. "Losing the ability to breastfeed because of his lack of intestines was so very devastating."
Levi spent three months in hospital before finally going home. Today, life remains challenging.
He lives with short bowel syndrome, a disorder caused by the loss of much of his small intestine.
The toddler, now 1, relies on intravenous nutrition for 18 hours a day through a line connected directly to his heart. He also has a colostomy bag.
"It limits his freedom to be able to be a toddler and run around and play," Jenny added.
Swimming and even playing in the rain can carry serious risks. A fever may require hospitalization because of the threat of a bloodstream infection too.
Reflecting on a reel she posted on Instagram (@medical.mama.moments), in which she wrote, "I mourn the life we could've had. But it's better than mourning my son," Jenny said the phrase captures the difficult balance her family lives with every day.
"People don’t always realize what another parent is carrying on their back such as life support for their baby," she said. "I feel judgement often because it looks like I’m walking my toddler on a leash. I feel judgement when I say he can’t eat fruit or drink juice. I feel judgement when I don’t allow him close to the beach or rain."
The diagnosis has also reshaped how Jenny views her relationship.
"When you... say your vows, 'through sickness and in health', I didn’t realize that wasn’t directly speaking towards a husband and wife," Jenny said. "Sickness can also mean for your children."
"To see if we can go home [from the hospital] has been the most challenging part of our relationship, but it made us stronger," Jenny said. "It can either make you or break you."
Contact Newsweek editors on this story: Charlotte Nisbet and Gray R. Thomas
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