Pediatric Tracheostomy Video is a Labor of Love for Parents
Dallas, TX (March 15, 2008) – Melanie Dragovits had been worrying about the stridor she often heard as her infant daughter breathed ever since she'd brought her home from the hospital.But when Elizabeth suddenly stopped breathing completely late one night, the world as they knew it came crashing down for the young mother and her husband, Matt.
The baby, who was already dealing with spina bifida and a related Arnold Chiari malformation, went limp in Matt's arms, and the couple truly believed the end was near for their precious little girl. Luckily, Matt decided to place the baby on his shoulder, which was enough to open her airway so breathing could resume. In the meantime, Melanie called 911 and paramedics rushed to the house.
Elizabeth was stabilized en route to the hospital, but the family's respiratory nightmare was just beginning. After much debate among medical professionals as to the cause of Elizabeth 's breathing difficulties, she was diagnosed with larynogomalacia and tracheal stenosis. The case was severe, and to her parent's distress, a tracheostomy was ultimately recommended.
“We were terrified of the trach,” recalls Melaine, “how it would look, how we would take care of it, what it meant for her future.”
Matt says the couple was initially in denial. “We had just gone through spina bifida surgery, shunt surgery, a posterior fossa decompression surgery, and now this. I, personally, couldn't get the image from the movie Braveheart , where his wife gets her throat slit, out of my mind. I couldn't imagine a blade going across my little baby's throat.”
But like other parents with children who have complex medical needs, the Dragovits trusted their physician's judgment, and Elizabeth had the trach. The training they received in the hospital, however, left them feeling as if more could have been done to help them take Elizabeth home. And as they coped with her multiple medical conditions over the next year, they decided to put their own professional skills to use in ensuring other families would be better prepared.
“Since my background is medical video production, and since my wife is a teacher, we were in a unique position to help other people,” explains Matt. The couple decided to produce a video on pediatric trach care and make it available on the Internet to other parents with children needing trachs.
As Elizabeth's condition continued to improve – she's an active two-and-half-year-old now who's beginning to talk in sentences (thanks to a cap on her trach) and take her first steps with the help of a walker – Matt and Melanie slowly but surely covered all the basics, including suctioning, humidity, trach ties, cleaning the stoma, trach change, warning signs, travel kit, and tips. “We wanted the program to be as comprehensive as possible so that a parent didn't have to guess,” says Matt.
Melanie says the couple looked at the video as almost an obligation. “We knew that there was a deeper purpose for why Elizabeth was given to us. We had the tools to help others get educated.”
Once they had the script well in hand, the Dragovits went to the health care community for a professional review. The American Association for Respiratory Care (AARC) was one of the groups they turned to for assistance in ensuring the information they were providing reflected state-of-the-art practice.
AARC members Timothy Myers, BS, RRT-NPS, from Rainbow Babies & Children's Hospital in Cleveland , OH , and Brian K. Walsh, RRT-NPS, FAARC, from the University of Virginia in Charlottesville , reviewed the script and offered expert advice on technical areas of concerns.
The result, say the two registered respiratory therapists, is an educational tool families can feel confident about using. “This video takes a very fundamental approach to tracheostomy care and management by the caregiver in the home setting,” notes Myers. “The detail and description is clinically accurate and up-to-date, yet very practical for the non-healthcare practitioner to provide this care accurately and safely.”
Walsh says the video provides a wonderful approach to tracheostomy care and management by parents and other caregivers. “I would recommend this video presentation to anyone who is faced with taking a child home with a tracheostomy.”
The video — “Breath of Life – A Caregiver's Guide to Pediatric Tracheostomy Care” — is available in DVD format for a small fee, which the Dragovits plan to use to produce additional pediatric videos in demand from parents.
“Melanie and I feel blessed to be able to help other families,” says Matt. “It has been very rewarding and therapeutic for us to share our daughter's incredible spirit with others and to know that the cross God chose our family to bear has a greater purpose.”
The video is available at www.AARC.org/store.cfm (search for Product number SW0023).
About the AARC
The American Association for Respiratory Care, headquartered in Dallas , is a professional association of respiratory therapists that focuses primarily on respiratory therapy education and research. The organization's goals are to ensure that respiratory patients receive safe and effective care from qualified professionals as well as supporting respiratory health care providers. The association continues to advocate on behalf of pulmonary patients for appropriate access to respiratory services provided by qualified professionals. Further information about the AARC and how to become a respiratory therapist are available at www.AARC.org .
Contact: Beth Binkley
972-243-2272
binkley@aarc.org# # #
