LEVI Montgomery has spent almost half his life baffling doctors. No-one could pinpoint why the infant would regularly lose consciousness after he tried to feed. He was losing weight. He spent most of his first year alive in hospital.
But since arriving at the Royal Children’s Hospital, the mystery of Levi’s stomach and digestive system — which were stopping him from feeding and absorbing nutrients — has been solved. These seizure-like attacks that he experienced each time he fed, despite looking like a neurological condition, were found to be the rare gastrointestinal condition called Sandifer syndrome.
The disease often occurs in premature babies who experience extreme reflux, with this writhing and twisting believed to be the child’s pain response to the feed.
“Even though it was devastating to get that news, it was also a relief,” said his mum Keira Martin. “I was constantly told I was overreacting, and that often happens to mums of premature babies. Getting him to The Children’s was a God send.”
Levi underwent surgery to treat gastroesophageal reflux disease, with surgeons wrapping the top part of his stomach around the bottom of the oesophagus. This is designed to create a tight seal and stop the acidic stomach contents going back up the oesophagus.
It was a difficult year. With frequent hospital stays, weight loss and infections, the surgery didn’t bring the relief Ms Martin had been hoping for. But further investigation found Levi also had another digestive condition called gastroparesis, where the stomach muscles don’t work properly to empty its contents.
With a comprehensive treatment plan in place, and Levi now relying on a new feeding delivery that bypassed the stomach, Ms Martin said they were now focused on getting her two-year-old to a weight where he no longer needed tube feeding.
“It’s been difficult because he hasn’t slotted into just one diagnosis,” she said.
“He fell into the too hard basket for such a long time, so we’re extremely grateful to the RCH because they gave us a plan.
“He has gone through a lot, but he has always done it with a big smile on his face. Whether he’s being wheeled into surgery, or coming out of surgery, he is always smiling.”
Originally published in the Herald Sun, Monday March 26, 2018. To read the original story, visit the Herald Sun website.
Words: Brigid O’Connell
Images: Jason Edwards