City/State: Athens, Georgia
Age of affected child: son, 3
Diagnosis: imperforate anus with a high prostatic fistula, tethered spinal cord (released), diastasis recti, urethra lstricture (resolved), megacystic & neurogenic bladder, bilateral hydronephrosis stage I (resolved), & VUR in the left kidney
PTN member 2 years
Conferences attended: 2016
I have been a member of PTN for approximately 2 years and attended the 2016 PTN conference in Orlando. My husband and I are parents of two young children, a daughter (5 years old) and a son (3 years old). Our son was born with imperforate anus, as well as several related issues (see above). Additionally, as our son has grown, we learned that he has fast transit. Since confirming his fast transit diagnosis, our son has transitioned to daily enemas and takes Imodium three times a day. Bowel management is going well and we are starting to see our son grow more rapidly and gain more weight.
I am primarily interested in the advocacy mission of the PTN. As I learned when I was first diagnosed with Type I diabetes at the age of 21, you have to be your own advocate for healthcare. Unfortunately, when my son was born, I did not have the knowledge or resources to effectively advocate for him. I did not understand the different surgical techniques that are used for imperforate anus. I did not realize the importance of seeking out experts in the field. As a result, my son did not receive the highest level of care and his anoplasty was redone when he was one years old. At last year’s PTN conference, I heard similar stories from other parents and the concern that new families are not provided with resources needed to make educated medical decision for their child.
If I am elected, I would like to advocate for advertising about PTN in Level IV NICUs. I believe the quicker we begin supporttng new families, the better educated they will become on anorectal malformations and associated illnesses. Better educated parents will be able to make well‐informed decisions and advocate for their newborns. PTN is a great resource for information on anorectal malformations and for identifying doctors and surgeons with a high level of expertise in the area. We may be able to better connect with families of affected newborns by providing NICU social workers with pamphlets about our organization that can be shared with these families.
I believe I am qualified to fulfill the responsibilities of a PTN board member because I am passionate about the care of affected individuals. Additionally, I have experience as a manager in a corporate environment, am well organized, and work well in teams. If am I am elected to the board, I will do my best to advocate for those affected by anorectal malformations and help these individuals and families feel connected within the PTN community and provide them with resources to make educated medical decisions.