To The Parent Whose Baby Has Just Been Diagnosed With Laryngomalacia

Dear Friend,

So your baby was just diagnosed with laryngomalacia. Can you pronounce it? Don’t worry, I couldn’t either. In fact, it took me three months to learn the correct pronunciation and spelling.

In time you will be able to spell it backwards. You will know more about this airway disorder than you ever thought possible. You will become someone we like to call a Malacia Mom (or Dad!). You will wear this title will honor. It will be a source of strength in the darkest of moments...a reminder that you CAN and WILL get through this.

Having a baby with an airway disorder may be one of the hardest journeys you will ever have to walk. And that’s okay. Do not be angry at this journey, it is here to teach you. Let it teach you. If you allow, the journey will  provide you with a whole new view on life. A more simple, wholehearted , grateful for every breath kind of view. 

Journeys have no end...do not spend your journey full of anger...instead,  spend your time focusing on the walk. Soak in the sunlight wherever possible, remain graceful when your heart is full of worry and always be kind... your journey is hard, that we know but someones journey may be even harder.

Friends will leave and friends will come. Friends will leave because it is their time to leave, not because their intent is to hurt you. Take a deep breath and let them go as beautifully as you let them in. New friends will arrive with hearts wide open. They will know how important a hug and a hot, home cooked meal is. Hug them back, tightly. Be thankful for the future with them.

Your partner, he (she) is scared. In fact, he is very scared. That anger he is showing? That is him letting you know all those emotions you are feeling, he is feeling them too.  It kills him to see you hurt like this... and there are no words to describe the pain HE feels seeing his baby struggle like this. Let him know how you feel and what you need. He doesn’t know what to do. He never thought he would have a baby with an airway disorder. You both can survive this but  if he chooses to disconnect and walk away, let him. Holding onto a relationship when its time for it to end will only fill you of anger, bitterness and resentment. Your baby needs ALL of you right now. You will be okay. You will recover.

You will grieve. Grief comes in all shapes and sizes and it always seems to hit you when your standing in line at the food store. Allow yourself to grieve for the healthy baby you were not given. This is a normal process ... do not let anyone tell you different.

Listen to your instinct. You know your baby better than any monitor or medical test. Let your voice be heard and if a doctor speaks over you--find a new doctor. Get to the best hospital.

Bills can be paid later, your child needs to breathe now.

Walk this journey with grace. There are going to be some high, high mountains to climb and the rain will pour... choose to let the good strengthen you while letting the bad empower you. Every step you take on this journey will leave footprints your Pint-Sized Powerhouse will follow. Show your child there is always a reason to have a Hope...anger doesn’t make life changing decisions  and the good always follows the bad.

You are an Malacia Mom (or Dad) for a reason... stay brave and breathe. 

Written by: CWL Founder & President Stephanie Hueston. 

How To Host A Malacia Meet-Up With Coping With LM

Thanks to modern technology, we are able to connect with each other from miles away. While online support can be poignant, little compares to meeting another parent who is walking the same journey as you! 

Illinois Malacia Meet-Up

The purpose of Coping With Laryngomalacia, Inc.'s Malacia Meet-Up Program is so parents (and caregivers) can connect directly with other local families. 

This program is made possible thanks to our amazing World Leaders Volunteers and their passion for the cause! 

Want to host your own Malacia Meet-Up? Follow these easy steps! 

Step 1.  Apply (here) to become a World Leader Volunteer at Coping With Laryngomalacia, Inc. 

Step 2. Once you become a World Leader, choose a location, date and time for your Malacia Meet-Up.

Step 3. Submit a Malacia Meet-Up application (here) to Coping With Laryngomalacia, Inc. 

Step 4. Once approved, Coping With Laryngomalacia, Inc. will create a Facebook Event and invite Parent Support members. 

Step 5. Receive coaching and support: 
Coping With Laryngomalacia, Inc. will provide one to one coaching on how to host a successful Malacia Meet-Up! 

New Jersey Malacia Meet-Up

How To Support A Family Who Is Coping With Laryngomalacia

You are scrolling through your news feed and see a post from an old friend, her baby was just diagnosed with a life threatening airway disorder. Her eight week old is now having emergency airway surgery.

Your son just called you at work (something he never does), the doctor just prescribed your grandchild an apnea monitor. The medical supply company will be delivering it tonight. 

You're babysitting your niece for the first time. She is choking with every feed, her stridor is so loud despite position changes- how does your sister cope with this?

Since there is no prenatal test for laryngomalacia (Polyhydramnios may be a marker though), every family who receives the diagnosis of mild to life threatening laryngomalacia world is turned upside down. 

Feeding difficulties to blue spells to major airway surgery, 

these parents are in desperate need of love and support. 

So what can you do to help? 

Stephanie says, "Offer to bring food or help clean the house. Be a listening ear."

Tiffany says, "Not come around when you have or have been exposed to illness (yes, this is a problem), wash your hands before touching baby, don’t smoke before being around baby."

Erica says, " Just ask. My support needs are different each day."

Erin says, "Please get CPR/First Aid Certified."

copingwithlm.org

Lisa says, "Ask about doctor appointments and offer to watch the siblings."

Trisha says, "A friend paid to have our carpets and air ducts professionally cleaned and changed all our air filters when we were at the hospital. So we came home to the cleanest air possible. It was something Id never had thought to do. I felt it was very thoughtful."

Sponsor a care package here.

copingwithlm.org

How To Host A Care Package Drive In 5 Easy Steps!

How To Host A Care Package Drive For Coping With LM In 5 Easy Steps! 

Step 1 

Choose your reason

Pint-Sized Powerhouse Birthday Party

Supraglottoplasty Anniversary / Survivors Party

In memory of your Pint-Sized Powerhouse

Just because 

Graphics to use:

Step 2 

Send invites, 

include Coping With LM's Wishlist

All donations are tax deductible.

Monetary donations can be made at copingwithlm.org

Helpful tip:

When collecting donations, be sure to include each donors name and mailing address with a list of items donated so Coping With LM can personally thank them! 

How To Help resource page, found here.

Graphics to use:

Jenna says, 

"I've  asked people to check in with their crafter friends. 

I've received gorgeous handmade things for drives from family members of my friends looking for a reason to knit/crochet/sew."

Amazon Wishlist, found here.

Full blog post, found here.

Step 3 

Collect donations, 

educate donors on airway disorders and 

how Coping With LM helps families cope.

Graphics to use:

Free Coping With LM e-Book, found here.


Read reviews of Coping With LM on Great Nonprofits! 

Step 4

Gather all donated items and post a picture on social media, be sure to tag Coping With LM!

Coping With LM can be found on Facebook, Instagram, Twitter and Pinterest.

Jenna says,

"When I get a donation I post pictures of it. It's a natural way to mention the Care Package Drive again and it's a nice acknowledgement for the people helping out."

Step 5

Send items to Coping With LM and feel good knowing YOU made a difference!

All donations can be mailed to:

Coping With LM

PO Box 313

Port Monmouth, NJ 07758

USA

Thank you so much for your support! 

Why Coping With LM Asks For Handmade Blankets

It was June of 2010, somewhere in the middle of the night and early morning. I sat at my computer, starring into the computer screen. A handful of tabs were opened, laryngomalacia-supraglottoplasty-surgery for an infant-what to pack for a hospital stay. 

Earlier that day, I signed the pre-op papers for my four month old daughter to have airway surgery. She had life threatening laryngomalacia, severe apnea, GERD, bradycardia, left ventricular hypertrophy and feeding difficulties that left her gasping for every breath. 

Medical intervention was needed and it was needed as soon as possible. 

Stridor filled our house. Loud and forceful then somehow comforting; at least I knew she was breathing.The lump in the throat and tightness in my chest was a constant reminder of what lay ahead, the thought of laying my baby into the arms of a surgeon made me physically ill. 

I knew I couldn't change what was about to happen but I could do my best to make her comfortable. I spent hours searching online for a blanket, I wanted it to be soft and warm. 

I wanted her to feel wrapped in love and strength. 

Would a Carter's blanket hold the same significance? If I purchased a blanket from Etsy, would the seller know my baby was about to have life saving airway surgery? Could he/she even pronounce laryngomalacia?

Handmade blankets that were donated to Coping With LM in Spring of 2017.

Unable to make a decision in mist of the storm, I brought a generic baby blanket to the hospital. As I sat in PICU and watched her breathe, I couldn't stop wishing she had something more.

As the months went on, my daughter began thriving. 

Surgery was a success and my baby was finally breathing easy! 

It was time to help others. 

Coping With LM's Care Package Program was created and shortly after, donated handmade blankets were being given to babies recovering from airway surgery, all around the world! 

Last year alone, Coping With LM gave 106 blankets from California to Canada to Ireland and beyond! 

Handmade blankets that were donated to Coping With LM in  Summer of 2017

No longer are babies with airway disorders laying in cold, sterile hospital beds. 

They are now wrapped in love and strength!  

 Gillian, mom of a Pint-Sized Powerhouse says, 

"Receiving a care package from Coping With LM made me feel like I wasn't alone, supported, cared for, wrapped in the kindness of that beautiful handmade hat and blanket."

The love and time every donor puts into each blanket does not go unnoticed. From a mother who wished for her baby to be wrapped in such beauty, I thank you. 

Blankets to books, everyone can support the cause!  

Learn how you can make a difference here.

Want to donate items from home? 

Visit our Amazon Wishlist here.

In health & happiness, 

Stephanie Hueston

CWL Founder and President

copingwithlm@yahoo.com

Overcoming Laryngomalacia And GERD: Jackson's Story

Photos submitted and written by Kimberly Reider, Jackson's Mom. 

It has been a few months since really being active on here. Most of you probably remember me and my son from his nonstop hospitalizations from chronic reoccurring respiratory infections/viruses. Photos and videos of wheezing, gagging, coughing, blue spells and stridor; as I was trying to figure out what this airway defect actually has on us and how to beat it. 

My sons story began from birth. He was born pretty quite. 'An under developed voicebox' we were told in the hospital. He was snorting all the time & sounded EXTREMELY congested. He was admitted to NICU for observe.. Where nobody checked his airway. They did see his reflux but at the moment it wasnt too bad because I was nursing. After discharge we had his follow up apt the next two days. He was one week old. From that time, at one week to 7 weeks old we went to different doctors multiple times a week and to emergency rooms as we genuinely believed he was fighting for air. He is the ONLY NEWBORN IVE EVER SEEN BREATHE THROUGH HIS MOUTH. his congestion was horrible. We were told the usual
°babies have small airways°your sons may be even smaller but not harmful° he must have inhaled fluid during birth° babies breathe loud

All in all NO DOCTOR had any concern. Though while laying completely flat his oxygen would drastically drop and he would start gasping for air. So his father and I took it upon ourselves with the support of his insurance to self refer to an ENT. 

Jackson, suffering from laryngomalacia and GERD.

Dr. Seth Linker, Tunkhannok Pennsylvania. ENT, he was a God send. Our first breath of fresh air. 

Someone who didn't even listen to me but INFORMED me. He suspected laryngomalacia right away. Did his in office scope and sure enough he had his proof. He instantly was prescribed medication for reflux as you all know reflux comes hand in hand. He chalked up the congestion mostly to reflux. His congestion was so loud it drown out the sound of stridor. (His squeak) he prescribed him an home apnea monitor as we both suspected sleep and feeding apnea. 

The first night we realize how bad his apnea was. And within a few days on zantac the congestion went away.

Jackson seemed normal from that point on, except for one BIG problem.

RESPIRATORY DISTRESS.

At 130 days old he had spent 78 of them sick. He was constantly in isolation in the Pediatric ICU. Constantly on antibiotics until we hit a point where we began to refuse, they didn't work anyway. At three months old, in PICU I pumped the last of my milk. Due to stress and non stop living in the hospital, apart from my other child took its toll and my supply vanished. 


That's when trouble really hit. He went from being sick all the time to screaming in pain, arching showing the worst of the worst reflux symptoms. We tried EVERYTHING. Every single H2 blocker and PPI. We did combinations and piggy backed them nothing worked. 

Of course, reflux flares cause laryngomalacia to be much worse. 

Now we were in PICU for ALTES (apparent life threatening event syndrome). If it weren't for his apnea monitor I would have lost my son in one particular night after an ALTES, I couldn't wake him. It was a fight to get him barley breathing until making it the local hospital where he was then transported back to the Children's Hospital a few hours away.

After doing a 24 hour ph probe study we learned just how severe his reflux is. Right away his doctors all wanted to do the Fundoplication surgery  we of course, were not jumping towards that idea. 

We decided to try to only medication we hadn't tried yet. Nexium.
Again it wasn't working and I was getting desperate to help him.

I was referred to an amazing reflux group here, where I learned so much about severe infant reflux. I learned more about reflux than my sons doctor's know. We significantly upped his PPI dose to PROPER dosing to severe reflux AND got into an amazing doctor (GI) five hours away from us. 

Jackson, breathing easy.

We learned basically of his problems were fed by the reflux & once we controlled it, life for us changed.

His airway is healing from acidic damage, he recently outgrew laryngomalacia which is what his ENT said would happen once we controlled his acid.

He hasn't had any ALTES AND NO APNEA. He has had his first cold that didn't require hospital stays, we were able to handle it at home. 

So my time here is done.

I plan to stay to help others, it does get better! 

Thank each and every one of you who have helped me in this. We are the strongest moms I know!💙

Jackson's Survivor Award 

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

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!