"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.
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