MIDDLETOWN, NJ - On Saturday, December 1, Coping With Laryngomalacia, Inc. (CWL), a Middletown-based non-profit organization that provides support for families dealing with the congenital birth defect known as Laryngomalacia, or LM for short, will host ‘Shop for a Cause’ Holiday Craft & Vendor Show. The event will be held from 11a.m. to 3 p.m. at the Leonardo First Aid & Rescue Squad, 32 Viola Ave., Leonardo, N.J. and will feature a gift auction, raffles, vendors, face painting for the children, and a catered lunch sponsored by Whole Foods. 100% of the proceeds will help support ‘floppy larynx’ babies from the local community as well as globally through various CWL-sponsored online support groups and programs.
Stephanie Hueston-Paden, the courageous 25-year old Leonardo resident who founded CWL in July 2010 as a result of her own child’s struggles, explained that the event is being held to increase awareness of LM and to raise funds for education and support of families who have to manage the often devastating side effects.
Shortly after giving birth to her second child Seraphina, Hueston-Paden knew something was terribly wrong. “Seraphina was born blue and purple and was not breathing. She was gasping for air, and the doctors kept telling me nothing was wrong,” Hueston-Paden said. Hueston-Paden was discharged from the hospital a day later, feeling very uneasy. A visit to a pediatrician three days after Seraphina’s birth did nothing to alleviate her fears, as she was again told nothing was wrong with the baby. Three months later, Seraphina was still having breathing problems, and Hueston Paden was still hearing that nothing was wrong. “I knew better than that,” Hueston-Paden added wistfully.
The family – father Danny, 27, and sister Liliana Hope, 4 - became accustomed to sounds of a heart/lung monitor. Hueston Paden remembers going to sleep and not knowing whether Seraphina would be alive the next morning. She had been instructed by her pediatricians to perform CPR if Seraphina’s breathing stopped and did not resume for 30 seconds. The emotional turmoil was devastating to the family. Finally, after a visit to an eye, nose and throat specialist, Hueston-Paden received the answer she had been desperately searching for. Seraphina was diagnosed with laryngomalacia, a congenital defect of the larynx which causes it to collapse due to malformation. That collapse causes an airway obstruction which makes breathing difficult or nearly impossible.
Hueston-Paden noted that while LM is fairly common, it is a little-known but life-threatening condition in 1-5% of babies who are diagnosed, who likely need surgery. Seraphina had surgery – a supraglottoplasty - in June 2010 at Jersey Shore University Medical Center. Surgery removes some of the ‘floppy’ tissue that obstructs the airway and makes it easier for LM babies to breathe, but the surgery is not a cure according to Hueston-Paden.
Symptoms of LM include strider, or noisy breathing; reflux; sleep apnea; cyanosis, or blue spells; and failure to thrive. As part of the mission to educate LM parents and other family members, CWL offers infant CPR demonstrations and classes through trained first aid responders.
While acknowledging that LM made life more difficult for her family, Hueston-Paden started Coping With Laryngomalacia (CWL) as a way to provide support to others dealing with same problems. She cited Seraphina as her inspiration as the name actually means ‘most powerful angel.’ The organization helps families dealing with an LM diagnosis through online support groups, a personal blog, informational events and seminars, toy drives, a formula donation program, and a blanket donation program. CWL collects new handmade blankets and distributes them to infants recovering from LM surgery at the Pediatric Intensive Care Unit (PICU) at Jersey Shore University Medical Center, Neptune. Toys are also given to the siblings of LM babies to comfort them, and new unexpired formula and formula coupons are provided to qualified families who are struggling financially. A card with Hueston-Paden’s contact information accompanies the blankets and formula, so parents know there is someone who understands what they are dealing with. Additionally, funds generated from CWL events provide ‘nap nannies,’ portable sleepers that are designed on an incline, to families with financial need.
“We had a long, hard journey. LM affects the entire family. I am in a unique position to help others now, and it’s pretty cool,” Hueston-Paden concluded.