MedWatch Today: Mother Battles Extremely Rare Muscle Disease

Med Watch Today

A mother who fought an extremely rare muscle disease was reunited with her family after spending more than four months at Community Regional Medical Center.

Jordan Mendoza did not know when she would ever hug her three-year-old daughter again, after being diagnosed with brachio-cervical inflammatory myopathy – an extremely rare condition that slowly weakens muscles in the upper body. The mother, who is 26-years-old, explains how it all started with what she thought was just acid reflux.

“It was about a year where I started with really, the acid reflux, and it turned into trouble swallowing and then weakness in my upper muscles… One night I was laying down and I had aspirated on my own acid reflux, so my then my fiancé told me we have to go to the hospital because it was affecting my breathing. So that’s when we came and I’ve been here ever since,” said Jordan.

Kaylee O’Brien is one of the speech language pathologists who worked closely with Jordan. She explained, “Because of the swallowing difficulties, sometimes things, when she was swallowing things, it would go the wrong way. Sometimes she would swallow things down into her stomach and later it would come back up. Some of that would go into her lungs, and because her cough muscles were weak, she had a really hard time coughing things out and defending her airway.”

Jordan was in respiratory failure and was put on a ventilator. After multiple tests and biopsies, doctors were able to pinpoint her complicated and rare diagnosis.

“The working diagnosis is brachio-cervical inflammatory myopathy, which essentially just means progressive muscle weakness… and the muscles involved for her were muscles responsible for breathing, swallowing, and then also like moving her upper extremities,” continued Kaylee.

Jordan had a tracheostomy tube put in to help her breathe and a feeding tube, since she couldn’t chew or swallow. Kaylee said BCIM is so rare, the staff had never seen a case like it.

Kaylee said, “I had to do a ton of research on my own to figure out what I was up against, how this was affecting her breathing and swallowing and the best way to treat it.”

Once the tubes were removed, Jordan underwent intense physical therapy at the Leon S. Peters Rehabilitation Center, including learning how to strengthen her muscles to swallow again.

Jordan remembered, “I hadn’t eaten since November… They were an inspiration to me. I was able to connect to a lot of people and they helped me to stay strong and know that I was gonna get better for my baby.”

It took a multi-specialty team at Community Regional working together to diagnose and successfully treat Jordan for this disease.

Kaylee said, “She has been seen by almost every specialized team that we have here in the hospital: the pulmonary team, GI, the hospitalists, the list goes on. It’s definitely been a collaboration of all of the teams trying to get to the bottom of what this disease process was.”

The speech language pathologist said she’s proud of Jordan’s will to get better.

“With the treatments that she’s gotten for this, we’ve been able to stop the progressive weakness and actually combat it, and now we’re getting her stronger and stronger each day,” said Kaylee.

Jordan is grateful for the support behind her and looks forward to a healthier future. She cried, “Definitely wouldn’t have went to another hospital, I knew this was where I needed to come.”

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