Mom Starts Nonprofit After Daughters Airway Surgery

In 2010, Stephanie Hueston’s second daughter, Seraphina was born. Shortly after birth it was very obvious something was very wrong. The newborn was blue and struggling to breathe. Stephanie was assured her daughter was suffering from “normal newborn congestion” and was told it would resolve within a few days.

As the days passed Seraphina’s health started deteriorating. She was gasping for every breath and stopped breathing multiple times a day. Stephanie rushed Seraphina to the pediatrician's office and demanded she see a specialist. Something was wrong with her baby, she just didn’t know what.

Five weeks after Seraphina’s birth, she was diagnosed with an airway disorder called laryngomalacia. Laryngomalacia is a congenital disorder of the larynx. The tissues above the larynx are floppy and omega shaped. When the infant breathes in, they collapse-creating an airway obstruction. For almost 95% of all cases LM is a common, benign condition. No further medical treatment is required after initial diagnosis. And then there is a very small percentage of babies that are diagnosed with life threatening LM. Stephanie’s daughter fell into this category. Seraphina's doctor had later told Stephanie, on a scale of 1-10 Seraphina was 12; the worse case of LM he has ever seen.

On June 11, 2010 Seraphina had life saving airway surgery known as a supraglottoplasty. During a supraglottoplasty, the surgeon cuts each side of the epiglottis tissue, creating more room in the airway for when the floppy larynx collapses. The surgery does not cure LM but helps improve the symptoms. After surgery, Seraphina was transferred to PICU where she was put on oxygen and morphine to ease the pain.

As the summer went on, Pint-Sized Powerhouse Seraphina started improving while Stephanie was falling apart. Exhausted, scared and overwhelmed Stephanie remembered advice her mother had given her; in every situation, you have a choice. Laryngomalacia wasn’t any different. Stephanie could let laryngomalacia destroy her or let it empower her, the choice was hers.

Coping With Laryngomalacia, Inc. was founded in July of 2010 and is the first 501 (c ) 3 nonprofit organization in the USA and in the world that provides support, strength and education for families coping with laryngomalacia, tracheomalacia and bronchomalacia. The CWL Team is made up 100% of volunteers who donate their time, support and passion to the cause daily; while many of them are coping with LM themselves.

In addition to 24/7 online support and education, CWL offers feeding difficulty support and resources, a care package program ingeniously titled the Breathe Easy Care Package Program as well their Pint-Sized Powerhouse Grant Program which helps families pay outstanding medical bills. The organization also offers a worldwide directory of Pediatric Ear, Nose and Throat doctors who specialize in LM. After finding a knowledgeable ENT, parents are then able to print out suggested questions they should ask at the first visit.

Because babies with laryngomalacia benefit greatly from being upright, CWL offers a Chibebe Snuggle Pod Program. Thanks to Chibebe's astounding support, babies (six months old and younger) with laryngomalacia can receive a Snuggle Pod, free of charge through CWL.

Last year alone, CWL gave 151 care packages to babies with life threatening laryngomalacia and $300.00 in Pint-Sized Powerhouse Grants! With a community reaching from New Jersey to California, from Canada to England and South Africa to Australia; parents are supported, educated and empowered thanks to the ongoing support from CWL's incredible donors and volunteers.

Coping With Laryngomalacia, Inc.'s work does not go unrecognized, at the start of the year they humbly accepted the 2017 Top-Rated Nonprofit Award from Great Nonprofits and launched The Laryngomalacia Study with Beaumont Children's Hospital. Through this unprecedented study, parents will use their experience with laryngomalacia to show that laryngomalacia does effect the quality of life for the parents as well as the patients.

For more information on CWL on how they help families cope please visit CopingWithLM.org

or find them on Facebook, Twitter, Pinterest and Instagram.

Want to help? Go here.

Was your baby just diagnosed with laryngomalacia? Start here.

Need to talk to someone directly?
Email Stephanie anytime at copingwithlm@yahoo.com