Wednesday, April 26, 2017

How One Mother Turned Her Daughters Health Crisis Into An Opportunity To Help Others

Coping WIth Laryngomalacia, Inc. will be referred to as CWL in this blog post.

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 defect called laryngomalacia. Laryngomalacia is a congenital defect 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 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 ICU where she was put on oxygen, steroids to keep her lungs open and morphine to ease the pain.


As the summer went on, Laryngomalacia Warrior 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.

Stephanie, Founder & President of Coping With Laryngomalacia, Inc.



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--all defects of the airway.  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 (Gelmix Thickener), 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.

What To Ask Your ENT


At the start of the New Year, CWL extended their partnership with Chibebe Snuggle Pod AUS and USA. Because of 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 107 care packages to babies with life threatening laryngomalacia and $500.00 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.

Seraphina with #LuTheLamb assembling care packages 




CWL's future is bright!
Planning for World Airway Defects Day is now underway, supporters are encouraged to paint their nails light blue for LM on July 10th to show their support!
The Lollipops For LM Project will be back this Halloween while CWL Founder & President Stephanie Hueston works closely with families who are walking the same journey she once walked.

World Airway Defects Day



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

Wednesday, April 12, 2017

Laryngomalacia: The World of Unknown, to a World of Much Known



Laryngomalacia: 

The World of Unknown, to a World of Much Known

Written by: Courtney Buhr at CountryMomsPlace.com 

If you are reading this post, you are probably experiencing the same things we experienced when we first heard the word Laryngomalacia. What is this? When should we trust our instincts? Where should we turn to? and How do we cope with all of this? Yes, its an emotional roller coaster, so read this post to learn how we went from a world of unknown to a world of much known!
Have you ever heard:
  • “Its normal for babies to choke on amniotic fluid”
  • “Its normal for babies to be congested from amniotic fluid”
  • “Your just not nursing your baby right”
  • “Your just spoiling your baby”
  • “Its normal for an oxygen monitor to beep a lot”
That may be true of any normally healthy new born baby, but not when it weighs on your conscious that something just isn’t right! If it doesn’t feel right its not!


June 12, 2015, was one of the best days of our life as we finally were able to meet our second child! A few hours after he was born, he choked and was immediately suctioned, but it was “normal”. He wouldn’t latch, but it was “normal”. He wouldn’t stop screaming and crying, but it was “normal”. He flailed his arms in his sleep, and he made weird noises, but it was “normal”. For everything I knew was wrong, the doctor or nurse had an excuse for why it was “normal”.
I NEEDED REASSURANCE, so at my son’s 2 week well baby check, I brought up my concurs with his PCP. He was quickly admitted to the NICU for stridor (noisy breathing) and sleep apnea (not breathing). The next day we were sent to Children’s Hospital, where he was diagnosed with Severe Laryngomalacia.
At 2 months old, he had dropped weight from 90% to 20%. which meant he needed surgery. Now we really started to worry as we were advised of possible tracheomalacia and bronchiomalacia. That’s when we had no idea what to do, who to turn to, or how to deal with all the crazy emotions.
Now he’s almost 2 years old. He’s been diagnosed with other related conditions, he hasn’t slept through the night since he was born, colds put him in the hospital, he has been put under for 2 surgeries and 4 scopes and will be having his next scope in 6 weeks. He is on several expensive medications. He sees a plethora of doctors and he goes to therapy 3 times a week
…and just like my instincts told me…its NOT normal!

This whole journey had thrown us into “a world of unknown”, just like the Coping With LM Organization describes. We have been through the worry, we have been judged for everything we do or don’t do with him, and it has tested our mommy and daddy relationship, but there is nothing more that has helped us stay strong for our kiddo, than Coping with LM.
This has been an amazing support group for our family, and so helpful in educating us about this condition! The best part, your never judged for having a conscious that something isn’t right, or that your “spoiling” your kid. They have offered us many resources for doctors, feeding, and anything that is related to Laryngomalacia. When our son had his first surgery, it was on short notice, and they made sure that he received his care package before his surgery. Being able to quickly access helpful information in one place, and know people are there to help and listen, weather its your neighbor or someone halfway across the world, has made a world of difference in advocating for our son and making the right medical decisions. Coping with LM has help us transition from a world of unknown to a world of much known!