Cynthia Bissell’s Lifelong Commitment to Tracheostomy
and Ventilator Support

In July 1993, Cynthia Bissell faced the challenge of caring for twin sons, Eric and Aaron, born three and a half months prematurely. While Eric struggled with spastic quadriplegic cerebral palsy, Aaron faced severe respiratory issues, including bronchopulmonary dysplasia and acquired subglottic stenosis—a condition caused by ventilator tube damage during his time in the NICU. At just one month old, Aaron underwent tracheotomy surgery and remained oxygen-dependent for several years. After three months in the NICU, Cynthia was able to bring her twins home.

​During the twins’ early, difficult years, Cynthia was often housebound and relied on the internet for information and support. Finding limited resources on tracheostomy care, she combined her nursing background and computer skills to create “Aaron’s Tracheostomy Page” in 1996. This website, dedicated to her son Aaron, quickly became a crucial resource for families in similar situations, highlighting the significant need for accessible tracheostomy information.​

Over the years, Cynthia’s efforts have evolved to keep pace with technological changes and the needs of the community, moving from message boards to social media platforms. Today, her Facebook group, with over 8,000 members, serves as a vital support network for individuals and families managing tracheostomies and home mechanical ventilation.

A Dedicated Start
Cynthia’s initial website offered crucial information for families managing pediatric tracheostomies. Taking on care responsibilities for a child that has a tracheostomy can often be overwhelming and confusing for parents that have little knowledge or experience doing so. For new parents in this situation, Aaron’s Tracheostomy Page offered a lifeline, providing a wealth of practical information on the ins and outs of pediatric tracheostomy care. This effort was later expanded into a guide published by Jones & Bartlett in 2000. Although the guide is now out of print, it marked an important step in providing valuable resources to families. Cynthia also created a listserv and message boards to facilitate discussion and support among users.

The pediatric board quickly gained popularity, and Cynthia fondly recalls, “The connections we created via this board became friendships that are still strong today.” The success of these boards led to the organization of three national tracheostomy conferences, which featured expert speakers and offered meaningful activities for families. “We had three national conferences, in 2004, 2006 and 2008. The first two were in St. Louis, the third was in Cincinnati. We had world-renowned otolaryngology speakers and lots of fun activities for families of kids with tracheostomies,” Cynthia adds. These events provided essential networking opportunities and support for families.

Adapting to New Platforms
As social media began to rise, the landscape of online support changed. “Eventually, with the coming of social media sites—especially Facebook—message boards and listservs became obsolete,” Cynthia explains. Her focus shifted from maintaining a website to managing a Facebook group, which now has over 8,000 members. “My website is still live at tracheostomy.com, but I don’t keep up with it anymore,” she notes.

​Cynthia’s Facebook group now serves a broad audience, including both pediatric and adult tracheostomy users, as well as those who use home mechanical ventilation. Although Cynthia acknowledges her limited experience with ventilators, her extensive background as a registered nurse for over 40 years provides her with a broad understanding of special needs care. “I had a trach as a baby, and I’ve had two children with tracheostomies,” she shares.

​​Evolving Support
The transition from message boards to Facebook has had its challenges. Cynthia notes, “The message boards were better than Facebook in my opinion. They were divided into topics and easier to read, search, and follow.” Despite this, she recognizes the value of Facebook in reaching a wider audience. “Topics on Facebook tend to get buried quickly, but the group still provides valuable support,” she says.

The focus of the Facebook group remains on providing peer support and networking. “Popular topics tend to be either adults with trachs due to chronic disease such as laryngectomies for cancer, or pediatrics with preemies who have airway or respiratory problems,” Cynthia explains. The group also facilitates the sharing of supplies and other resources, enhancing the support network.Managing a large Facebook group comes with its own set of challenges. “I even have trouble keeping up with the Facebook group, as it has so many members and it is very busy,” Cynthia admits. Nevertheless, she is committed to maintaining a positive environment. “I do occasionally get reports of problem users and block them,” she says. “Thankfully we don’t get a lot of that, and most people find the group very helpful.” Cynthia has established a “terms of service” – which prohibits such things as selling services, solicitations or fundraising, and making false or defamatory comments – to help ensure the group remains a supportive and respectful space.

A Lasting Commitment
Cynthia’s work in supporting families with tracheostomies and mechanical ventilation highlights her dedication to care and community. “While face-to-face support groups are great, the internet has made it possible for people to connect from anywhere in the world,” Cynthia observes. Her Facebook group stands as a testament to her ongoing commitment to providing support and fostering connections among individuals and families facing these challenges.

For those looking for support and community, Cynthia Bissell’s Facebook group offers a valuable resource. Cynthia’s journey and the community she has built continue to offer hope and assistance to many navigating the complexities of tracheostomy and home mechanical ventilation care. 

Source: Brian Tiburzi Ventilator-assisted Living, Volume 38, Number 3, July 2024