Monday, December 9, 2013

CWL Founder & President Stephanie's Annual Fundraiser Speech



"On January 18, 2010 our second daughter, Seraphina was born. Shortly after birth it was very obvious something was very wrong. She was blue and struggling to breathe. I was assured she was suffering from “normal newborn congestion” and told it would resolve within a few days.  As the days passed Seraphina’s health started deteriorating.She was now gasping for every breath and stopped breathing multiple times  a day.  I rushed Seraphina to the pediatrician's office and demanded she see a specialist. Something was wrong with my baby, but I didn’t know what.


Five weeks after Seraphina’s birth, she was diagnosed with 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 99% of all cases, LM is 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. Seraphina fell into this category. Her doctor  said on a scale of 1-10… Seraphina was 12, the worse case of LM he has ever seen.


Shortly after Seraphina’s diagnosis we learned she was also suffering from severe reflux, sleep apnea and left ventricular hypertrophy, also known as LVH of the heart which a life threatening within itself.


Later we would learn she had developed brain damage in the front left lobe of her brain from the lack of oxygen. Seraphina now battles Epilepsy.


On June 11, 2010 Seraphina went in for  a supraglottoplasty, airway surgery at JSUMC. During a supraglottoplasty, the surgeon cuts each side of the epiglottis tissue, creating more room in the airway for when the floppy larynx collapses. This surgery does not cure LM but helps improve the symptoms.  After surgery she 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 Seraphina started improving but I was falling apart. You see, no one can prepare you for something like this. To wake up in the middle of the night to your baby not breathing, to have to breathe for her until the paramedics arrive. It is overwhelming, scary and unnatural. I was in a very dark place and was trying my best to cope with a journey I thought I’d never have to walk.


How do I stay positive and still realistic? How do I remain strong and still acknowledge my fears? How do I cope?


Then I remembered advice my mother had always given my sister and I while growing up. She would say, in every situation in life--you have a choice. You always have a choice. Laryngomalacia wasn’t any different. I had a choice, I could let laryngomalacia destroy me or I could let it empower me.The choice was there, the choice was mine.


With the support of my family and friends I enrolled in Brookdale Community College’s Certification for Nonprofit Management Program that fall. Going to college terrified me beyond words, it was something I had never done. If Seraphina could survive a life threatening  airway defect , I could certainly do this.


Coping With Laryngoamalcia, Inc. 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 LM, T M and BM--all defects of the airway.  The CWL Team is made up of  100% of volunteers, who donate their time, support and passion to the cause daily, while many of them are coping with LM themselves.


CWL  offers several programs which are always free of charge to our families they include:
*Surgery Support Program
*Formula Assistance Program
*Chibebe Snuggle Pod Program
We also host
* local playdates and
*worldwide live online chats


*Feeding can be very big challenge for severe LM babies so we  offer a Feeding Difficulty Support Program, from breastfeeding to tube feeding, we offer resources to help educate and support everyone on their journey.
*and then we have our newest program, The Pint-Sized Powerhouse Grant Program where CWL helps families pay outstanding medical bills.


In addition to our programs, our website offers free education and resources for anyone who wants to learn more about LM, T M and BM.
To date, CWL has helped well over a thousand  families all throughout the USA, Canada, Europe, South Africa, Australia and most recently the Philippines and Finland.


This organization is constant proof that the good ALWAYS follows the bad---that in every situation you have a choice, you can let it destroy you or you can let it empower you.

Thank you everyone.  "

-Stephanie Hueston
CWL Founder & President
CopingWithLM.org

To view photos of the event click here.


(c) Coping With Laryngomalacia, Inc. All rights reserved.


Thursday, December 5, 2013

Holiday Helpers Giveaway!

Do you still have some holiday shopping to get done?
Enter to win a $10.00 gift card to Babies R Us/ Toys R Us!

Happy Holidays from 
Coping With Laryngomalacia, Inc!

How to enter:
*comment on THIS blog post with your Name and Email address*
*LIKE the CWL Facebook page*
*this contest is open to EVERYONE*
*one winner will be picked via Random.org on 12/11/13*
*CWL will pay for shipping*

Monday, November 4, 2013

Growing Little Seeds

Photo by: Stephanie Hueston
 
we have lost sight of normal childhood behavior and growth. 
so concerned with numbers, percentiles and charts we forget everyone is different. 
we all GROW differently, in our own time. 
as a parent, it is our responsibility to make sure our little seeds have enough love, water & sun. we must shield them from the harsh winter storms then stand in awe 
as we watch them bloom into their own.. 
unlike any ever before, unlike any that will come.
how sad of a world it would be if every wild flower, every grain of the beach's sand, every autumn leaf, every snowflake was... the same.
so today, soak in the suns warm rays and breathe in the crisp fall air. 
stand beside your little seed and whisper "grow, grow, grow into you."  
 
-CWL Founder & President
Stephanie Hueston.
 

Tuesday, August 13, 2013

How LM Supermoms Are Chosen

"How LM Supermoms Are Chosen"

(adapted from a story by Erma Bombeck)


Did you ever wonder how LM Supermoms are chosen?
Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to
profanity."
Finally, he passes a name to an angel and smiles.
"Give her a LM baby." The angel is curious. "Why this one, God?
She's so happy."
"Exactly," smiles God.
"Could I give a LM baby to a mother who knows no laughter? That
would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea
of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so
rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has
just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--
ignorance, cruelty, prejudice--
and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in
the air.
God smiles. "A mirror will suffice."

Monday, August 12, 2013

Our Journey: Evan's Story

Our Journey

When I look at my little boy today it is difficult to believe that two and a half years of his life was pure torture…. torture for him as well as I. I watched my baby deteriorate in front of my eyes and all the while his doctor kept assuring me, ‘It is something viral. Let it run its course.’ Or, ‘Your son has asthma and reflux, he is going to cough.’ His doctor couldn’t have been more wrong. Here is our journey, in a very small nutshell.

My pregnancy was hard. When I say hard I mean I was incredibly sick, vomiting up to 30 times a day, suffering from Hyperemesis, Polyhydramnios and an incompetent cervix. These three things had never been a part of my vocabulary but I never knew how many more words that I would add to my vocabulary after my pregnancy and caring for my child. I was on bed rest for a total of almost 7 months and had a PIC line to administer fluids and IV Zofran so I could stay hydrated. At 23 weeks I went into active labor with my son and at that time I had about a millimeter of cervix left to protect my son from being born. I felt cheated. I had worked so hard doing everything I was told to protect my son and sustain a pregnancy and then I get hit with that? Thankfully, my contractions were stopped for the most part and I was released from the hospital after a week on strict bed rest. My doctor advised me, if I made it to 32 weeks it would be a miracle… yet we were shooting for 28 weeks. 28 weeks came, then 29, 30, 31, 32, (I was ecstatic and my doctor was amazed!) 33weeks, 34, 35, 36, 37, then 38 weeks. I was more proud of myself, my body and my unborn child for lasting that long! It worked, I kept him in! At 38 ½ weeks I was induced and ready to finally hold my precious baby. After 14 hours of labor I had progressed NONE. I couldn’t believe that I was begging my son to stay in and then he wouldn’t come out!? My doctor knew I was less than happy and scheduled a C-Section for that next Monday due to having way too much fluid and the potential of another failed induction. I went in to the hospital and checked in for my C-Section, knowing I was leaving with a baby this time. Twenty minutes after I was wheeled into the operating room I heard, ‘Happy birthday big boy!’ I lost it. I heard this squeal cry… the most amazing sound I have ever heard in my life. The doctor held him over the curtain and I couldn’t believe he was finally here. Evan Kingston was born at 7lbs 5oz, 19 ½ inches long and he was PERFECT. He had ten fingers, ten toes, he was active and alert. He had some trouble breastfeeding but I was assured that was fairly normal and to keep trying. I tried at the hospital and continued at home. No matter what I did, I had to stop. My production was gone and my post partum started at that time. Felling like a terrible mother was an understatement. 



Then, he started getting sick. Everything started with what seemed like a constant cold and problems feeding. Evan vomited at almost every feeding and when I say vomit, I don’t mean a little spit up I am talking about full blown projectile vomit. Evan was a frequent flyer at the pediatrician’s office but I was always assured that this was all normal and the mucousy cough, nasal discharge and wheezing was very likely due to me giving birth via C-Section. I was also assured it would all get better with time. When Evan was roughly four months old his pediatrician finally referred him to a Pediatric Pulmonologist. The visit to that doctor left me less than thrilled as my son was diagnosed with ‘asthma.’ Over the first year, Evan was diagnosed with asthma and GERD, (reflux) which was still not good enough for me. They were missing something…. I knew it. After many appointments to Evan’s pediatrician over the first year of his life, he ended up having a sweat test to determine whether he had Cystic Fibrosis. The wait for the test result was grueling. Thankfully, his sweat test came back negative for CF. I was very thankful for the answer but still confused because we still had no diagnosis and I was beginning to feel like maybe I really was just a, ‘crazy over-bearing first time mother.’

At 15 ½ months old, my mother gave me the name of a new pediatrician and I promptly made an appointment. I showed the doctor pictures and videos of Evan and his breathing, coughing and vomiting. She LISTENED and allowed me to cry and beg her to help my poor baby. She immediately knew something was very wrong. We were referred to a Pediatric Otolaryngologist (ENT doc) and anxiously awaited the appointment. The day came and I took my smiling, happy, sick baby into the office praying that we would finally get some answers. 30 minutes later I met my son’s angel…. Dr Adrian Latz of Children’s Mercy Hospital in Kansas City, MO. I call her my son’s angel because she truly saved my son’s life. Dr Latz listened to Evan’s medical history and did her usual question and answer for each new patient. She used a very small tube and inserted it into Evan’s nasal passage to get a better look at his throat and airway. That is when I heard that word for the first time… Laryngomalacia.

Evan was diagnosed with Laryngomalacia instantly after the scope and a plan of action was set forth. I have been asked many times how I felt in the moment of his diagnosis and I believe that to be a pretty loaded question. I felt angry, sad, scared, unprepared but most of all I felt VINDICATED. I was right all along. For 16 months my child was drowning in his own fluids. After all of the bronchitis, pneumonia, nasal discharge, vomiting, stridor etc, WHY did it take so long for someone to catch this?
A swallow study was scheduled, his diet was changed and we discussed the other ailments that can follow an LM diagnosis. I was assured we would know more after the swallow study and yes…. we learned more. His swallow study showed penetrations on every thickness of liquid until we reached honey. I was devastated for my child. I knew we had an even harder road ahead of us but felt very optimistic and ready to do whatever it took to get my child healthy. We started thickening all of his liquids and watching for any progress. Sadly, there wasn’t as much progress as we had hoped and we discussed the possibility of performing a Supraglottoplasty and also gel foam injections if he did in fact have a laryngeal cleft. We did another swallow study before making the decision of surgery and the result came back that his penetrations/aspirations were worse.

Less than a month before my son’s 2nd birthday, I took my son into the hospital and signed the paperwork to allow his procedure to be performed. My mother and I played with him and took pictures while we waited for him to go back to the operating room to keep him from getting anxious. He was already used to hospitals so that wasn’t too big of a deal to him. When the nurse said it was time, I remember thinking in my mind, ‘Please God, guide his surgeons hands and heal my child. Please God, allow this procedure to change his life so he can have a more normal life.’ I handed my baby to the nurse and watched her walk away with him while he was screaming for me and crying…. I have never felt so guilty in my life. I chose this surgery for him, I put him in her arms, I signed the consent form and if something happens to him it is all on ME.
The doctor told us the surgery would take roughly an hour or two and she would come down after the surgery and let me know how it went. My mother and I waited in the room with all the other parents and grandparents waiting to find out the fate of their child. An hour and a half later his surgeon came down and took me into a conference room where she told me that Evan’s surgery went excellent. She said we had made the right choice because there is no way that his condition would have improved over time. She ended up doing the Supraglottoplasty and gel foam injections into Evan’s larynx due to the significant laryngeal cleft that he had. I was ELATED! My sweet boy will get better and I made the right choice! The surgeon said that Evan would be in recovery for about an hour and a half then be transported to the Pediatric Intensive Care Unit. I came out of the room to update my mom and we cried, hugged and thanked God for this opportunity for Evan. Then we waited. One hour went by…. And hour and a half went by and I started feeling strange. I finally got an update from the recovery room nurse who said, ‘Evan has had a hard time with the anesthesia. He is having dips in his oxygen and not waking up like we want him to. We ask parents to prepare themselves in times like these.’ I just hung up the phone. I was frozen. I couldn’t talk, I couldn’t speak, I couldn’t move. Then my brain flipped back on and I said to myself, ‘I will not prepare myself for ANYTHING, other than taking my child HOME.’
3 ½ hours after his surgery ended, we got the call to meet my son in the ‘reunion hallway.’ He was in this cage like crib and hooked up to monitors with tubes everywhere. I had never seen something like that and I had a lot of silent tears. The nurses had us follow behind his bed so that Evan didn’t see us and get agitated. We got to the room and he was still very groggy and wasn’t opening his eyes much in the first few minutes. I walked over to his bed once they got him settled, played with his sweaty hair, held his hand and kept telling him, ‘Mommy is here baby, Mommy is here. Everything is going to be okay, I promise you.’ The nurses asked if I wanted to hold him and I of course said YES! I got situated in the recliner in his room and they brought him over to me and placed him in my arms. I tried so hard to be strong but at the moment I lost it…. I cried and held him tight in my arms and couldn’t stop kissing his head and moving his hair around. Something came over me in that moment they put him in my arms- something similar to the first time he was EVER placed in my arms, except it felt better than that. I never though anything would feel better than holding my son for the first time yet, this was 100x better than that. I said out loud, ‘Thank you GOD, oh thank you GOD!’ Over and over and I have no idea how many times I said it. Everyone in the room was crying and my mother was able to get a few photos of the moment. 

 
Evan recovered well from the surgery and after a few months of weaning him off of his thickener…. He was done. No more thickener. No more reflux medication. No more limited diet. My son was finally freed from the unfair prison he had been locked into for so long. My son IS a fighter. My son survived.

Evan turns 4 years old in just three short weeks and I couldn’t be more optimistic about his health and future. He has grown out of every symptom of LM including recurrent croup which was the last on the list and that stopped about 6 months ago. I have to assure you parents that it WILL get better. Some get better faster while some take a little more time and more medical intervention. Some get diagnosed within days or weeks and some take 16 months or more, like my son. Every LM,TB or BM child is different but the one thing they all have in common is their will to fight. They are innocent and should never have to go through what they have but I can assure you, there IS a reason for everything. Although we may not know the reasons now, we will find out. We weren’t blessed with children who have perfect health but we were blessed with children that are perfect for US. God wont ever give us anything we cannot handle so take it as a fine compliment that God believes in US so much, that he entrusted us to care for his most special creations.



When I look at my little boy today, I think how blessed we are to have each other. I think of how my life and his life may not have gone as we could have ever imagined but we faced a demon and we beat it.

WE are fighters and HE is my pint sized powerhouse. 

 

Always counting my blessings…. Evan- I will hug you, cuddle you, kiss you, hold you and love you all the days of my life. I will never take a single second for granted. You fought to stay with me and I will continue to fight to keep you happy and healthy.


BREATHE EASY!

-Megan Crone

Monday, July 15, 2013

3rd Birthday Giveaway Winners!

Comment Number 10: Kacie Spink.

Comment Number 15: Katy Edgington 


Comment Number 2: Stormye Wommack

THANK YOU EVERYONE WHO ENTERED!
 Kacie, Katy and Stormye, please check your Emails for details on how to claim your prize!

Wednesday, July 10, 2013

3rd Birthday Giveaway!


Happy 3rd Birthday to Coping With Laryngomalacia, Inc! 

To celebrate we will be giving away 3 Believe bracelets!

Our Believe bracelets are handmade by Christine at Loreley Jewelry,
one size fits most adults. 


There is always a reason to believe the good will follow the bad. 



Giveaway Rules & Terms:
-Open to the public, worldwide
-One entry person
-You do not have to have a baby with LM, TM or BM to enter!
-Each entry must provide a valid Email address
-3 random winners will be chosen via Random.org
-Each winner will have 3 days to respond to CWL with shipping information

How to Enter:
-Comment on this post with your name, Email address and a Happy Birthday Wish for CWL.
-Like Coping With Laryngomalacia, Inc, AND  Loreley Jewelry on Facebook.


THIS GIVEAWAY WILL BE OPEN FROM July 10, 2013- July 15, 2013

Tuesday, June 11, 2013

Breastfeeding Your Pint-Sized Powerhouse

 
Photo credit: Rambling Photography, LLC.

Breastfeeding.
 The word sounds so glamorous while your pregnant... then four days post birth, 
it's 2am and your trying to get a screaming, hungry newborn to latch on. 
He latches on and the pain is so excruciating your pretty certain you just saw stars. 
As your milk fills his small belly, he begins to choke. 
His tiny arms are flailing and  he is gasping for air.  
You both sit there and cry, you wanted to breastfeed so badly. 

Does that story sound familiar? 
It does to me, I have been there... twice.
Breastfeeding is challenging enough then add an airway defect, 
it gets a whole lot of complicated, very quickly.
As the exhaustion builds and emotions rise, 
finding outside support and help is a feat within itself.

Once you have the proper education, help and support...
breastfeeding can be one of the best things to ever happen to 
you and your Pint-Sized Powerhouse!

YOU CAN DO THIS.

First thing, take a nap.
Even LM Supermoms can not think clearly on two hours of sleep.
Let Dad or Grandma watch baby for a few hours while you regroup and rest. 

Feed yourself, well.
Recovering from birth and making milk are two very draining events on the body.
Give your body the right fuel while increasing your 
iron intake to help with postpartum bleeding. 
Every time your baby nurses, drink at least 8oz of water.  

Get comfortable.  
No one likes eating over the kitchen sink!
Find a relaxing, comfortable space to nurse. 
Some moms like nursing in rocking chairs while others enjoy nursing in bed.

Have a small box next to you with all your must-need items:
cell phone
paper and pen
chap stick
water/snack
nipple cream
burp rag
breastpads
magazine/book
t.v. remote control
breastfeeding support pillow
heating pad for post-birth cramping 

Play relaxing music and put your feet up. 

Ask for help.
The "raising a baby takes a village" saying didn't come out of nowhere. 
Ask close family and friends to care for older children, pets and the house. 
If family and friends suggest helping by feeding the baby, gently remind them
you and your baby are working, very hard to establish a successful breastfeeding relationship right now. 
There will be plenty of time for play-dates with Grandma in the future! 

Find a good ENT.
You will have a very hard time continuing your breastfeeding relationship
 unless the LM is treated properly.  

Rule out other issues.
Rule out tongue tie, lip tie, forceful letdown and other causes of breastfeeding trouble. 

Get a good breast pump.
Even if you plan on exclusively nursing, you still need a good pump. 

Reasons to pump:
to help with mastitis/plugged duct
to donate milk/build freezer stash
to give yourself a break

Not all pumps are created equal, do your research
While a double electric breast pump may work well from many women,
 some respond better to a single manual pump.

If anyone tells you, 
"you only pumped 2oz the past two sessions, you are not making enough for your baby."  
let them know they need to brush up on their breastfeeding education.

CWL Founder & President Stephanie Hueston's Pint-Sized Powerhouse Max, still nursing at 14 months old.


Formula is not bad. 
Formula has saved many babies lives over the years.
In times of need, it is a wonderful thing.
When used correctly,
 formula can help many breastfeeding moms overcome their challenges.

Supplementing with formula.
Formula should only be given after the baby nurses on 
each breast and is still showing hunger cues.
Breastfeeding is all supply and demand. 
If your baby does not demand more supply, your body will not make more supply. 

Thickening breast milk without formula.
There are other options to thicken breast milk without using formula.

Position is everything.
From relieving a plugged duct to correcting a poor latch
Nursing positions can make or break a breastfeeding relationship.
As your baby gets older, he will create new nursing postions--oh the joys of nursing a toddler!
Until then, you are responsible for finding what works best for YOU and your baby. 
Many LM, TM, BM babies do well with nursing upright

Dealing with negative feedback.
There will always be someone who has to rain on your parade.
remember, it is their problem--not yours.
You are doing the very best thing you can for your child.
You are providing him with amazing nourishment, security and creating a bond unlike any other.
If someone has a problem with your boobs feeding your child... 
tell them to go walk around Victoria's Secret.  ;)

Low/no milk supply options.
If you are still having low or no milk supply after working with your Lactation Consultant, using human milk donations may be a good option for your baby. 
are both great resources.
Also, if you have a close friend/family member who is nursing...
do not be scared to ask her for milk..99% of the time she will be honored to donate.



It's not always going to be this hard.
From porn-star sized breasts to bleeding nipples the idea of being at the park and whipping out your breast to feed your baby may seem like a lifetime away. 
You will get there.  
Your breasts will return to a more non porn-star size in about six weeks. 
Your nipples will heal as your baby (and you) become better with latching. 
Your baby will not always nurse for 45 minutes every 3 hours and as your baby learns how to crawl and play...you will have to remind him to take a break and nurse. 
Most importantly, the choking from the laryngomalacia 
will subside as your baby gets older. 


More resources:
The Leaky Boob
KellyMom.com

Breast milk can also be fed through a feeding tube and by a SNS .

CWL Founder & President Stephanie Hueston can be contacted 
24 hours a day, 7 days a week. 
CopingWithLM@yahoo.com

Disclaimer:
this post is based on experience only. 
it is not intended to override or replace any doctors medical advice. 
should you have a serious problem breastfeeding or 
your child is having trouble breathing please contact your doctor immediately.

© Coping With Laryngomalacia, Inc. All rights reserved.


Monday, June 3, 2013

Getting Answers: 2013 Research Project- Data Summary

Getting Answers: 2013 Research Project

Coping With Laryngomalacia, Inc.
a 501 (c ) 3 nonprofit organization.
CopingWithLM.org







Introduction
At the start of the new year, CWL launched its first worldwide research project. The project consisted of two separate surveys (one regarding the child and one regarding the pregnancy of the child). 
The surveys were open to all LM, T M, BM families, around the world. 112 people from 34 US states, Canada, Sweden, France, Scotland, Australia, Liverpool, Norwich, England and Ireland all participated in the surveys. Participants had the choice to “skip” all questions and for some questions, could choose more than one response. No one was compensated for their time or responses. All responses were anonymous to CWL.

The Results

Part 1: The Pregnancy

1.The top 3 states/countries with LM, T M, BM mothers and children were:
  • California, USA
  • New York, USA
  • Canada

2. Age at which the mother conceived the LM, T M, BM child:
39% said 25-30 years old

3. Prescription medication use during the pregnancy:
Out of 80 responses, an overwhelming 55 said yes they took medication while pregnant.
The most used medication was an antibiotic followed by an antidepressant.

4. Family history of LM, T M or BM:
88% said there was no family history.

5. Use of hair dye during the pregnancy:
55% said yes, they did use hair dye during the pregnancy.

6. Prenatal vitamin use during pregnancy:
90% said yes, they took their prenatal vitamin during the pregnancy.

7. Did the mother suffer from severe morning sickness (hyperemesis gravidarum):
88% said no, they did not suffer from HG.

8. Participants were asked to rate their pregnancy:
53% said they would rate their pregnancy as low risk.


9. Chemical and environmental contaminant exposure during pregnancy:
48% said they were exposed to smoke followed by 28% said  flu and 26% said mold.

10. Weeks gestation  the baby was born at:
63% said 39-41 weeks (full term).

Part 2: The Child

1.The top 3 states/countries with LM, T M, BM mothers and children were:
  • California, USA
  • New York, USA
  • Canada

2. Gender of baby:
71% said boy.

3. Age at which the baby started showing symptoms:
48% said symptoms were present at birth followed by 39% said within the first two weeks after birth. All participants noted symptoms.

4. Age at diagnosis:
79% said at 0-3 months followed by 16% said at 3-6 months.

5. When diagnosed, what category was the LM, T M , BM:
please note, parents of mild cases usually do not seek out support/education so they would not be aware of this survey.
53% said moderate followed by 33% said severe (needing surgery).

6.Need for reflux medication:
88% said yes, their child needed reflux medication.

7. In addition to LM, TM and BM, other diagnosis the child has:
please note, participants were allowed to choose more than one response.
The top 3 are:
  • 78% Gastro: reflux, ulcers, chronic swelling of the airway
  • 52% Feeding Problems: Failure to Thrive, need for feeding tube or feeding therapy.
  • 29% Other


8. Age the child needed surgery:
80% said within the first 6 months of life.

9. The need for more than one surgery (supraglottoplasty):
73% said no, there was no need for a second surgery.

10.  Stridor improvement:
42% said the stridor improved after surgery followed by 36% said once reflux (GERD) was under control.

Conclusion
After reading the combined data from each survey it is apparent no family history is needed to have a child with either defect, medication use during pregnancy may suggest a link to all three defects and most of the babies are born at full term. Babies seem to all show symptoms at birth or within the first two weeks of life. The survey suggests LM, TM, BM affects more boys than girls and many moderate-severe babies require the use of prescription reflux medication. If the baby requires surgery, it is usually performed within the first six months of life and it is very rare a second supraglottoplasty is needed.The actual number of severe babies to mild babies is still unknown since many parents of mild babies do not seek out support.