Tuesday, December 29, 2015

Your Baby Has Laryngomalacia, Now What?

Has your baby just been diagnosed with laryngomalacia? Welcome, glad you found us. You are probably feeling very overwhelmed, confused and scared. Not really sure how to even pronounce laryngomalacia let alone know where to begin. The doctor may have told you your baby has mild-moderate laryngomalacia and you are now on the "watch & wait" course of treatment. He may have ordered further testing such as a chest and neck X-ray, a sleep study or maybe even prescribed acid reflux medication. Your baby may be having difficulty feeding, every ounce is a battle. You are unable to find good information how to properly nurse a baby with an airway defect. Maybe your baby has been turning blue and stops breathing, you are now headed into the hospital for surgery. You are exhausted and in desperate need of support, strength and education. You have come to the right place, we will be here for you every step breath of the way. 
~Stephanie Hueston, CWL Founder & President CopingWithLM@yahoo.com, Contributor to The Mighty.

What is laryngomalacia?
Laryngomalacia, or “floppy voice box,” is an infantile condition where the larynx (voice box) does not fully develop which causes the immature cartilage of the upper larynx to collapse upon inhalation. LM results in partial airway obstruction, typically causing a specific high-pitched squeaking noise upon inhalation, which is referred to as stridor. This ultimately causes an airway obstruction which is the reason for the cyanosis.The part above the vocal cords called the supraglottic larynx is tightly curled, with a short band holding the epiglottis, cartilage shield in the front, tightly to the mobile cartilage in the back of the larynx, or the arytenoids. These bands are known as the aryepiglottic folds which create the precise movement that opens and closes the vocal cords for phonation, or sound. The shortened aryepiglottic folds cause the epiglottis to be curled on itself. This is known as "omega shaped" epiglottis in laryngomalacia. Some infants have feeding difficulties related to this problem. Rarely, children will have significant life threatening airway obstruction. The vast majority, however, will only have stridor without other more serious symptoms.

Time is the most common treatment in more than 99% of infant cases. In more severe cases, surgery may be necessary. A supraglottoplasty involves cutting the aryepiglottic folds to let the supraglottic airway spring open. Treatment of gastroesophageal reflux disease, or GERD, can also help in the treatment of laryngomalacia. GERD treatment is effective because gastric contents can cause the back part of the larynx to swell and collapse even further into the airway. In some very rare cases, a temporary tracheostomy may be necessary to maintain an airway to give the child time to grow.* Learn more here.

I am looking for a recommendation for a good Ear, Nose, Throat Doctor. 
Do you have any?
Yes, you can view our top-rated ENT's here.

My baby has his/her first appointment with the Ear, Nose, Throat doctor in the near future. What questions should I ask?
We suggest printing out our free What To Ask Your ENT resource page, found here.

What are some common tests and procedures prescribed for babies with moderate to severe laryngomalacia?
From bronchoscope to a sleep study. We have compiled a list of common tests and procedures so you can understand and better educated yourself along your journey, found here.

When is surgery needed? 
Surgery is the treatment of choice if your child's condition is severe.
Symptoms that signal the need for surgery include:
  •     Life-threatening apneas (stoppages of breathing)
  •     Significant blue spells
  •     Failure to gain weight with feeding
  •     Significant chest and neck retractions
  •     Need for extra oxygen to breathe
  • Heart or lung issues related to your child's inability to get enough oxygen 
Do all babies with Laryngomalacia need surgery?
No, only 5% of all babies diagnosed with laryngomalacia will need surgery. Surgery should only be preformed to help treat life threatening LM. 

My baby needs surgery, can you help?
We would love to send your baby a care package. You can apply here.  

Are your programs available worldwide?
Yes, our programs are always free of charge and available worldwide. You can apply for our programs here.

I am looking for an organic thickener to thicken my baby's bottles. 
Do you recommend one?
Before changing your baby's feeding routine, please consult his/her doctor. We do, however, recommend Gelmix Thickener.  

My baby is having difficulty feeding. Do you have any resources that can help?
You can find more support, strength and education on laryngomalacia related feeding difficulties here for breastfeeding, here for bottle and formula feeding, here for reflux and here for tube feeding

My baby has severe laryngomalacia and needs a tracheotomy tube. Do you have any additional resources? 
Although rare, some  babies will need a tracheotomy tube (trach) to help him/her breathe. ​We have partnered with Moms of Trach Babies to help provide you with continued support, strength and education.
My baby needs to sleep on an incline, do you recommend any safe sleeping products to help?
Before changing your baby's sleeping routine please consult his/her doctor. We do, however, recommend the Fisher-Price Rock N Play Sleeper  and the Chibebe Snuggle Pod (Australia families only). 

What are some natural remedies I can try to help my baby breathe easier?
Before changing your baby's treatment plan please consult his/her doctor. We do, however, recommend using nasal saline spray, a cool mist humidifier (like this one) and sleeping on an incline.  

I am interested in wearing my baby. Which carrier do you recommend? 
Our Founder & President Stephanie Hueston is an Ergobaby affiliate and has been babywearing her laryngomalacia babies for 5+ years. She would love to talk to you about the benefits of babywearing! 

I am exhausted from not sleeping. Should I let my baby Cry-It-Out?
We are strongly against the Cry-It-Out Method of sleep training. Crying infants experience an increase in heart rate, body temperature and blood pressure. Crying also swells the airway, making the symptoms of LM worse. We strongly support the Wait-It-Out Method of sleep learning. You can read more about it here.  

Every time I bring my baby out in public, people make comments about my baby's noisy breathing (stridor). What should I do?
Although laryngomalacia is considered "common" most people have never heard of it. They hear the noisy breathing (stridor) and assume your baby is fighting a contagious illness. We understand how frustrating this can be but we encourage you to take this opportunity to educate the public on what laryngomalacia is. You may pass out our informative brochure (found here), refer them to our website (CopingWithLM.org) or show them this video.  
We also recommend our medical alert car seat/stroller sign, found here

My baby has severe laryngomalacia, should I contact my local first aid squad and let them know? 
Yes, contact your local First Aid Squad or EMS providing agency and inform them that a member of your household has laryngomalacia. The squad or agency will then ensure that the EMTs in your area will be made aware of your residence and the possibility of laryngomalacia complications in their response area. Also, in the event of an emergency, be prepared to briefly inform the responding emergency personnel as to what laryngomalacia is, and its resulting complications. Sometimes the fire department or a police officer will arrive before an ambulance and will have only basic knowledge of first aid; so it's important for you to be well informed and ready to help them help you. You can read more about emergency preparedness here.

Is there a laryngomalacia awareness day? 
Yes! #AirwayDefectsDay is July 10, 2016. We encourage all of our supporters to paint their nails light blue for laryngomalacia!

Is Coping With Laryngomalacia, Inc. on social media?
You can follow us on Facebook, Instagram and Pinterest. Be sure to use #LuTheLamb in all your social media posts!  

I would like to host a Malacia MeetUp, how do I begin?
That sounds great! Please Email us at  CopingWithLM@yahoo.com to learn more about hosting a Malacia MeetUp near you.

I want to connect with other parents but I do not want my posts to show up in my friends news feed. Is there an online support group just for parents?
Yes, you may join our closed support group here

I would like to share my child's journey with others. Are you accepting blog submissions?
Yes, we are always accepting blog submissions for our blog. We ask that submissions be kept to a 850 word maximum, are fully edited and keep with #TheGoodAlwaysFollowsTheBad tone. Pictures are welcome! You may submit your story to CopingWithLM@yahoo.com please include your name, address and a 3-5 sentence bio about yourself. 

Malacia Mom Megan with her son Evan.

Coping With Laryngomalacia, Inc. has positively impacted my life. How can I give back?

We are happy to hear we helped you cope with laryngomalacia! There are a handful of ways you can give back, each one is always needed and greatly appreciated!

  • You can make a tax deductible donation here
  • Share your experience with CWL on our Great Nonprofits page, found here.
  • Donate items to our Breathe Easy Care Package Program, wishlist found here.

Monday, December 28, 2015

#LuTheLamb Giveaway: And the winner is...

And the winner is, entry #6!
Congrats Nicole, check your Email for more details on how to claim your prize.
Thanks to everyone who entered, Happy New Year!

Sunday, December 20, 2015

The Good Will Come

Almost six years ago I was forcefully introduced to the world of life threatening laryngomalacia. Since only 5% of babies who are diagnosed with laryngomalacia, will be diagnosed with life threatening laryngomalacia, I had a very hard time finding outside support and information. I was alone and lost in my journey. Unable to connect with other parents, unable to see that the good really does follow the bad.
pictured: Seraphina, age 5, putting together care packages for 
her fellow laryngomalacia friends.

Somehow, life went on... in between all the hospital stays, airway surgery, oxygen tanks and those long, long nights I slept with my hand on her chest- feeling every breath. Those nights turned into days, then into weeks then months and before I knew it, I was singing Happy Birthday to my baby- on her 5th birthday. She survived. I survived. We survived.

I am now at a place in my journey where I can see the good. I witness the good, everyday. No longer is my baby hooked to an apnea monitor, no longer does she turn blue, no longer does she choke while feeding.

Our days are filled with cookie baking, reading Little House On The Prairie and pottery class.

If you are struggling to see the good, please know it WILL come. The sun will shine again.

Coping With Laryngomalacia, Inc. is here for you, every step of the way.

Stay strong and breathe easy,
Stephanie Hueston
CWL Founder & President

Wednesday, December 16, 2015

Remember You Are Never Alone

"When you hear the noisy breathing, remember we heard that too, When your concerns fall upon deaf doctors ears, remember we felt that too, When you are told your Child has laryngomalacia, Remember you are never alone. We are in this struggle together. When you are scared because your child can't get their breath, We have been there too. The beeps hounding you from the monitors from the fragile baby you want to protect. We can cope if we all cope together. We can do this if they can do this. Can't we? The moment they tell you your baby needs surgery, That you must hand them over and trust them with something, someone so precious. The fear, You are not alone, we felt that too."-Malacia Mom Noami

Monday, December 14, 2015

#LuTheLamb Holiday Giveaway! (CLOSED)

Happy Holidays from everyone at 
Coping With Laryngomalacia, Inc.!

We are so excited to be offering a 
giveaway to our amazing families!

Gift bag includes:
 #LuTheLamb stuffed animal
 Medical alert car seat/stroller sign
10 brochures 
Sample pack of Gelmix Thickener
Handmade zipper pouch from SewLoved on Etsy

*over a $50 value!*

  • Once all four tasks are completed, leave a comment on this blog post with your name and a valid Email address.

One random winner will be selected and Emailed on 12/23/15.
This giveaway is valid worldwide.
Shipping is paid for by Coping With Laryngomalacia, Inc.
Coping With Laryngomalacia, Inc. is not responsible for International custom fees. 
This giveaway is not sponsored by SewLoved on Etsy.
This giveaway is not sponsored by Tags 4 Tots on Etsy.
This giveaway is not sponsored by Facebook or Instagram. 
This giveaway is not sponsored by GreatNonprofits.com

Tuesday, December 1, 2015

#GivingTuesday Is Here!

 Support Coping With Laryngomalacia, Inc. by shopping with Amazon Smile or by making a donation directly on our website:

thank you so much for your support!