Maia’s Story

Site created on February 17, 2022

Maia was born with a congenital heart defect, called a vascular ring, that had to be repaired at 3 weeks old. During her procedure, there was a complication causing one of her vocal cords to be paralyzed. With her vocal cord paralysis, Maia developed trouble eating, drinking, and breathing. Because of the ongoing care Maia would require and multiple out-of-town doctor visits a week, her mother left her job to care for Maia full time. When she was only a couple of months old, Maia was given a surgically implanted feeding tube that still provides her with her full nutrition. Throughout her first year of life, multiple surgical attempts have been made to help Maia breathe better, but none of those attempts have been enough to correct the problem because of her constant struggles with reflux that is causing poor healing.  At the beginning of February, Maia had an adverse breathing event while she was playing at home. This event led to Maia's most recent hospital admission at Lurie Children's Hospital in Chicago. This account has been created to share the most recent updates and progress as Maia continues on her journey to better health. 

Newest Update

Big update!

Journal entry by Amara Rivera —

Maia and I spent some quality time in Chicago yesterday before her big procedure today. Today, she went to the operating room for a triple scope so they could look into her upper airway, her lungs, and her stomach. This is done in preparation to hopefully get her trach out. After the procedure, each specialist had great news- everything looked great! 
Maia's next step before getting her trach out is a sleep study with her trach capped (plugged) to make sure sleeping will be safe without the trach. Once this is completed, and if the results are positive, we will be able to permanently remove her trach at that time. The goal is to have this done this summer!

Please continue to pray that Maia's sleep study comes back normal and she is able to get her trach out soon!
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