From loss to advocacy: Colorado City mom raises awareness for neonatal appendicitis

COLORADO CITY, Texas (KTAB/KRBC) – Pregnancy for Lexi Williams was smooth sailing. She was excited to welcome her firstborn into the world, a little boy named Harrison. She brought him home and got used to her new normal, but within weeks, things took a turn.

“The pregnancy was wonderful. No complications. He was born healthy, eight pounds, three ounces, and I thoroughly enjoyed being pregnant. Labor and delivery were smooth,” Williams recalled. “Around three weeks is when we noticed a sudden change. Despite my husband and I voicing our concerns, his symptoms were overlooked.”

The symptoms overlooked were vague and aligned with other common illnesses in newborns. Williams said during the visit to the Shannon Medical Center in San Angelo, she was told it was Bronchiolitis, a condition similar to RSV.

“It can mimic a lot of common illnesses or even just things like acid reflux or colic. I thought that that’s maybe what it was, but I told my husband, I said, ‘He’s getting more reluctant to eat,'” Williams said.

What was later discovered to be neonatal appendicitis had gotten worse, and Williams was determined to get answers.

“Sunday morning rolls around, and he is being fussy with me again. I told my husband, ‘I don’t care if they think I’m overthinking. Something’s just not right.’ Again, first-time mom. So, I’ve never experienced any of this,” Williams said.

After sitting in an emergency room filled with cold and flu-riddled patients, Harrison was examined. The original diagnosis still stood with the medical professionals, but they admitted him to the Women and Children’s Unit for observation and treatment. It was in that hospital room when Williams said her worst nightmare became her reality.

“I noticed that he started to kind of tug in his airway right here, and his shoulders were struggling, like shrugging. He started to have a more distended belly and was making a kind of grunting noise,” Williams said. “It had gotten to the point where his appendix ruptured and he basically went into septic shock, and then that led to a cardiac arrest.”

After calling for a nurse, it was identified that something was wrong. They escorted Harrison to another room, and the Williams’ were informed that Harrison would be intubated and transferred to Cooks Children. Williams said she took a bathroom break to gather herself, and then the unthinkable happened.

“We walk out, and my husband’s waiting outside the restroom door for me, and we just hear alarms going off throughout the entire women and children’s unit. Harrison coded. I kind of had a feeling that it was, like something in my heart was preparing me,” Williams said. “They brought Harrison back, and then he coded a second time. After he coded that second time, I looked at my husband and I said, ‘This is it. Like, I know. Even if they get something back, he’s not here.”

But Harrison’s story is not a stranger to neonatal appendicitis. Williams went to Facebook to share their story and publicize the difficulty of the conditions. Due to the vague symptoms it physically presents and the lack of direct communications from babies, it often goes overlooked, Williams said.

“They’re just like they would be in an older child, but they just can’t help. They can’t tell you, newborns and infants can’t,” Williams said. “My Facebook Messenger was just full of other mothers, probably over 100. But out of those, one of them, her daughter, passed four days before Harrison in the Dallas area due to neonatal appendicitis, and a lot of the same things, symptoms weren’t realized, and everything was kind of neglected until she went into cardiac arrest, and they figured it out too late.”

Now, Williams is sharing Harrison’s story to bring awareness about the rare condition and others like it. She says her biggest advice to other parents is to trust your instincts.

“Don’t ever let anyone dismiss your parental instincts. Stand firm in those. Even if something does not feel right, push for answers. Push for transparency. Even if you’re being told everything looks fine,” Williams said. “So many other moms coming forward who have experienced loss and or medical negligence, and how sharing my story is helping them to be more brave and want to stand up and no longer stay silent for whatever it was that they had to endure.”

Williams hopes to start a nonprofit to support her advocacy effort for Neonatal Appendicitis and other rare conditions that can appear in newborns.