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What is Laryngomalacia?

Laryngomalacia is a disorder that affects the larynx (voice box) of infants. Laryngomalacia most often presents as noisy breathing or stridor as early as 2 weeks of age. Infants with laryngomalacia will have stridor and may also have difficulty in breathing, feeding and gaining weight, failure to thrive and respiratory distress. This can lead to poor quality of life and anxiety in parents. The natural course of this disease typically will progressively worsen up to age 4-8 months and resolve by 12 to 18 months. Most children do not require surgical intervention. (source

 

What is Tracheomalacia?

Tracheomalacia is a condition where the tracheal cartilage (windpipe) rings soften, partially collapsing when a child is breathing. This collapse most often occurs during expiration. Tracheomalacia may be primary or secondary. Primary tracheomalacia is caused by anterior prolapse of the posterior tracheal wall while secondary tracheomalacia (rare) is caused by external compression. This external compression is most often caused by a vascular anomaly where an artery compresses and weakens the tracheal cartilage leading to collapse. Examples of vascular malformations that can cause this problem include aberrant right subclavian artery, pulmonary artery sling and vascular rings and slings. In most cases, this is managed without surgical intervention. (source)

 

What is Bronchomalacia?

Bronchomalacia is very similar to tracheomalacia however in bronchomalacia the cartilage softening occurs in the bronchi of the lungs. Bronchi are branches off of the trachea and also have cartilage that can become soft and collapse. When this collapse occurs in the bronchi it is called Bronchomalacia. Bronchomalacia can also be primary or secondary. (source)

 

What is Pharygomalacia?

Pharyngomalacia is a collapse of the walls of the pharynx. The pharynx is the area behind the nose and the mouth. It also surrounds the supraglottic structures. It can cause obstructive event but is mainly self-limiting. Often it can be overcome with positive pressure or bypassing the collapse (nasal trumpet). (source)

 

Do you have any suggested reading?

Yes, we suggest reading our free e-Book, 'When It's More Than Noisy Breathing',  Laryngomalacia: Disease Presentation, Spectrum, and Management and To The Parent Whose Baby Has Just Been Diagnosed With Laryngomalacia,  and MalaCards: Laryngomalacia .

 

Do you have information for family and friends?

Yes, family and friends may download our free e-Book and read this blog post

 

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.

 

I am looking for a knowledgeable and proactive Pediatrician.

Do you have a list?

Yes, you can view our top-rated Pedi'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 on your journey, found here.

 

My baby has an upcoming sleep study. What questions should I ask?

You can find a list of questions to ask here.

 

My baby has an upcoming barium swallow test. What questions should I ask?

You can find a list of questions to ask here

 

What items should I bring to the hospital?

You can find a list of what to pack for baby and Mom & Dad 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?
Maybe,  5% of all babies diagnosed with laryngomalacia will need surgery. Surgery should only be performed to help treat life-threatening LM. 

 

Will my baby need more than one supraglottoplasty?

Supraglottoplasty has been shown to have over a 90% success rate in healthy children with laryngomalacia. (source)

 

What should I know before surgery?

Read What You Should Know Before Your Child Has Surgery here .

 

What is the cause of Laryngomalacia and Tracheobronchialmalacia?
The exact etiology of laryngomalacia is not known. The underlying dysfunction is related to the redundant mucosa, poor support of laryngeal cartilages and poor neurological tone. The most widely accepted theory of laryngomalacia describes laryngomalacia as a consequence of an immature neurological system. (source)


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 (some) are available worldwide. You can apply for our programs here.

 

My baby has his/her first appointment with the Neurologist in the near future. What questions should I ask?

You can find our What To Ask Your Neurologist resource page 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 has severe laryngomalacia and needs a tracheotomy tube. Do you have any additional resources? 

Although rare, some babies will need a tracheostomy 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.

I want to get my baby a monitor, which one should I get?

Babies (and children) with airway disorders should only use a hospital-grade apnea monitor and/or pulse ox. You can read why here

 

What should I bring to the hospital?

You can find a list of what to bring to the hospital here.

 

My friends and family don't understand what I am going through. What can I do?

We suggest directing them to CopingWithLM.org and sharing this blog post with them.

 

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 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 a severe airway disorder, 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 an airway disorder. The squad or agency will then ensure that the EMTs in your area will be made aware of your residence and the possibility of complications in their response area. Also, in the event of an emergency, be prepared to briefly inform the responding emergency personnel as to what the airway disorder 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.

 

Do you have a caregiver's information sheet?

Yes, you can find it in our free e-Book here.

 

Will my future children have an airway disorder? 

This topic is covered in  our free e-Book, 'What It's More Than Noisy Breathing.' Written by Coping With LM Founder & President Stephanie Hueston, Dr. Prasad Thottam D.O., FAAP, and Dr. Suzanne Forman D.O.

Is there a Laryngomalacia Awareness Day? 
Yes! World Airway Disorders Day is July 10, 2019. We encourage all of our supporters to paint their nails #LightBlueForLM!

 

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


I would like to host a Malacia Meet-Up, how do I begin?
That sounds great! Please read this blog post then email us at  CopingWithLM@yahoo.com to learn more about hosting a Malacia Meet-Up near you.

 

I want to connect with other parents but I do not want my posts to show up in my friend's news feed.

Is there an online support group just for parents?
Yes, you may join our closed support group here

 

How can I connect with other parents who are local to me?

You can connect with local parents through our World Leader Program! The purpose of the World Leader Program is so newly diagnosed families can connect with "seasoned" parents in their area. All of the World Leaders are volunteers who donate their time and passion to the cause, daily. You can find a World Leader by you 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 an 850 word maximum, are fully edited and keep a positive 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. Need inspiration? Read Evan's Journey here

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.

 

 

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