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Support Groups for Parents of Babies With Trachs

A tracheostomy breathing apparatus allows air to flow to the lungs of people who cannot breath by other means. The tracheostomy surgical procedure inserts a breathing tube through the front of the neck and into the patient's trachea, to treat different disorders. Online and offline support groups for parents of children with "trachs" provide stories of inspiration, care advice and general support.

  1. Aaron's Tracheostomy Page

    • A parent of a child who had a trach from birth until he age 4 started Aaron's Tracheostomy Page, a website with a support forum and a Pediatric Tracheostomies froum dedicated to parents and caregivers of children with tracheostomies. It also contains a section called Ventilator Kids, for parents of children on ventilators. Aaron's Tracheostomy Page, an independent nonprofit project founded in 1996, provides its services free of charge, but does encourage donations. The site requires visitors to provide an email address to create an account on the message board, to join over 1,500 forum members.

    Tracheal Stenosis Forum

    • The Tracheal Stenosis webpage covers all things related to tracheal stenosis and trachs. The site features a support forum for individuals with tracheal stenosis, with a special section, Children with TS, for the parents and caregivers of children affected by the disorder. To join the Tracheal Stenosis forum, users must register for a free account by providing an email address. The TS forum has more than 1,000 members as of 2011.

    TrachCare

    • TrachCare, a 501(c)(3) nonprofit organization based out of Massachusetts, states as its goal to "provide a means for families who share similar experiences of caring for children with trachs to connect with each other, share relevant resources and information and promote an advocacy-focused network." Founded in 2004, the support group hosts events in the Boston area and has a listserv email mailing list as well as a traditional mailing list for parents wanting information about trachs and the events hosted by TrachCare. The group provides its services free of charge, but suggests a $25 donation toward the costs of maintaining the organization.

    John Hopkins Medical Center

    • Hosted at the Johns Hopkins Medical Center in Baltimore, Maryland, the Johns Hopkins Tracheostomy Support Group meets on the second Wednesday of every month at the hospital's Green Spring Station. The free group not only serves as a meeting location for people and the family members of people with trachs, it serves as a educational forum where people can learn about the disorder from hospital staff. Attendance is open to the public.

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