Information, Education, Support and Advocacy for
Families, Children, Teens and Adults Who Are Living With The Challenges of
Congenital Anorectal, Colorectal or Urogenital Disorders


 

Bea Smith

City/State: Austin, Texas
Relation, age of affected child: son, 5
Diagnosis: In addition to IA, he is affected by VACTERL (tethered cord, hemivertebrae, mild heart conditions, chronic kidney disease, neurogenic bladder), eosinophilic esophagitis along with Celiac disease, malabsorption, and developmental delays/learning disabilities
PTN member 5 years
Conferences attended: 2014

Howdy! My name is Bea Smith from Austin, Texas. I am a parent of an affected child who is 5 years old. In addition to IA, he is affected by VACTERL as well as other related conditions (see above). He receives medical care locally, at Cincinnati Children's Hospital, and Columbia New York Presbyterian Morgan Stanley Children's Hospital. I have been a PTN member for 5 years and attended the 2014 conference in Phoenix. I follow them on Facebook and am a parent‐to‐parent mentor.

In additton to PTN, I am a former member of the family advisory council for Cincinnati Children’s Colorectal Clinic and currently am on the family advisory council for Dell Children’s Hospital (Austin, TX). I am the Facebook administrator for the Texas IA and Texas VACTERL support groups as will as the Imperforate Anus/Bowel Management group. A little about myself‐ I am a registered nurse and advanced practice nurse. I worked as an ER nurse for 10 years and have worked in family practice for 11 years. I really enjoy my clinical practice and love being a nurse! I also am fluent in Spanish.

I feel all areas of the PTN mission are important and naturally are interconnected. I am most experienced and knowledgeable with providing information and education. I try to stay current with the latest IA information and am learning about associated conditions. I have benefitted from learning from others‐ both parents and IA affected adults. Having been through the corrective surgeries and bowel management, I am honored when I can provide support to another parent or IA adult. I enjoy advocating via family advisory boards, where I try to bring awareness of IA and what it is like to have a child with rare, complex conditions. When my son was younger, I also authored special needs blogs and spoke at our local Rare Disease Day event.

As my child approaches school‐age, I have taken classes to learn more about IEP and 504 plans. I am always trying to learn how to maneuver health insurance to obtain better coverage. The IA community is truly is a family to me‐ we are all in it together. Together we can help spread awareness and education, push for advancements and integrated care (especially improving the transition from pediatrics to adult care), and improve the outcomes for all affected by IA.