Relation, age of affected individual:son, 10
PTN member since 2012
Conferences attended: 2014
Diagnosis: VACTERL association
My name is Amy Cohen and I am hoping you will support me in becoming one of the PTN Directors. My husband, Matt and I are parents to Noah, 10, who has VACTERL association. Noah receives most of his care at University of Vermont Children's Hospital, but was hospitalized 6 months after birth at Boston
Children's Hospital and has received occasional care at Boston and Dartmouth Hitchcock in New Hampshire.
Noah was born with high IA with a fistula and had a diverting colostomy at birth along with a repair of his trachealesophageal fistula. There were some surgical complications so he had a long hospital course over those first 6 months. Like most of our kids, he has been busy since and has had 27 surgeries involving his bladder, bowel, heart, lungs, and spine. He currently has a mitrofanoff and manages his bowel routine through a cecostomy that we are pleased with but the process of tweaking and maintaining his bowel management program is, well, a process. It is a never ending cycle of managing constipation, preventing accidents and keeping things running well for him. I'm overall happy with our team, always curious about out of state resources that we read a lot about but haven't accessed yet and most importantly, aware that even
with a great team, the work and decisions about what to tweak falls heavily on families.
About me: When Noah was born I had career directing a program for children with autism. Close to 5 years ago, I became a family advisor for our Children's Hospital. Two years ago, I made a career transition and assumed a role at our Medical Center as the Program Manager for our Patient‐ and Family‐Centered Care initiative. I am passionately committed to this work building true, meaningful partnership between patients, families and healthcare providers. I am very interested in bringing this passion and commitment to advocacy to the work involved in a director position.
I believe that my skills educating children and families and conference planning, which has been a significant part of my professional life, would serve the PTN Board well. I first learned of the Pull Thru Network in 2012 and was so frustrated that I didn't know about it earlier in our journey. I wish that our healthcare systems were more conscientious about helping connect families with the resources they might need outside of the doctor's office.
In 2012 and 2016, we were not able to attend the conference because of summer surgeries, but we did attend in 2014 and the experience was life changing. The conference achieved a perfect balance of medical information, social/emotional content and opportunities for peer connectton. I wait for and read every PTN News and so appreciate the Facebook posts.
To summarize I have a strong belief that together we as families can shape the future for our kids as well as the future of care that they receive and the support and accommodattons that are available to assure the very best quality of life possible and I am eager to take an active role in that task.