NPC-QIC 2014 Fall Learning Session!
Registration for the NPC-QIC 2014 Fall Learning Session is now open! Sisters by Heart and NPC-QIC want to send YOU to the Fall Learning Session November 7-8, 2014! Together, Sisters by Heart and NPC-QIC are offering parent travel scholarships, valued at $500 each, to three parents to attend the learning session in Cincinnati, OH. If you are new to the HLHS world, haven’t heard of NPC-QIC before, or have questions about what NPC-QIC does, we have put together a little information for you. The National Pediatric Cardiology Quality Improvement Collaborative’s mission is to improve the care and outcomes for children with cardiovascular disease. NPC-QIC’s current quality improvement project is working to improve survival and quality of life for infants with Hypoplastic left heart syndrome (HLHS) during the "interstage" period between discharge from their initial open heart surgery- Stage 1 Norwood - and admission for a Stage 2 biredirectional Glenn procedure. Fifty-five (55) centers from across the country have come together with parents to improve the care for HLHS babies.
Ask any parent who has attended a NPC-QIC learning session about their experience and their reaction will be the same; it is life changing. Natasha Sawyer, Sisters by Heart board member, shared her experience on her personal blog after attending her first learning session in January of 2013:
“The conference was more than I could have ever imagined it would be. I'm not sure what I expected, but it definitely wasn't this. Teams consisting of cardiologists, nurse practitioners, nurses, dieticians, therapists, social workers, and parents filled a large conference room and the excitement began. Over 100 people were in attendance, including 15 parents, representing centers from across the country. From the moment I walked in, I felt welcomed. I felt important. Doctors and team members expressed how thrilled they were to see so many parents in attendance and how crucial we are to the success of the collaborative.
Before the conference, I did not fully comprehend how amazing pediatric cardiologists and their team members are. Sure, I knew it took a special kind of person to work with babies and children with life-threatening heart defects, but until this weekend, I did not see it as more than just their "job". Please bare with me for a few minutes, I am still on an "emotional high" from the past two days and I am desperately trying not to jump up and down and shout for joy while I try my best to describe what I witnessed.. The members of the NPC-QIC have more passion for saving Hypoplastic Left Heart Syndrome babies than you can even begin to imagine. They are not satisfied with their current programs. They are not satisfied with the percentage of babies surviving from the first to second surgery, even though just 30 years ago these babies were being sent home to die. They are spending so much time and energy going above and beyond what is expected of them to change the future of children born like my son. They are changing the quality of life for these kids- kids and families they have yet to meet and have no tie to! I used to think Cardiologists were keeping their ideas to themselves, not wanting to share their "trade secrets" with anyone else. This weekend, I saw how open every team was to sharing their "secrets" with their colleagues. I watched cardiologists and team members from different centers take notes as another shared what is working for their center.
This weekend, I saw not only passion for caring for HLHS kids, but a fire to continue to make advancements and improvements for these children. I am so humbled by this experience, and feel forever indebted to these physicians and care team members who are helping our children continue to defy the odds. I cannot wait to share everything I have learned with my team's collaborative coordinator.” Natasha Sawyer, HLHS Mom, http://www.ramblingsofaheartmomma.blogspot.com/2013/01/npc-qic-2013-wint...
Parents with a single ventricle child, who required a Norwood or Norwood varient surgery may attend the learning session and/or apply for a travel scholarship. You do not need to be currently involved with your child's interstage clinic.
Sisters by Heart will be accepting travel scholarship entries until September 1, 2014. In order to be considered, please send an email with "Learning Session Scholarship" in the subject field to info@sistersbyheart.org with the following information:
Name
Address
HLHS child's name and DOB
HLHS child's hospital
A brief paragraph on why you would like to attend
If you are interested in attending and can make arrangements for childcare/time off work, please apply! This is such a wonderful opportunity to share your opinions, answer questions from a “professional” perspective as a parent, and most importantly be involved in helping to improve care for HLHS children.
Awarded scholarships will be announced via email by September 8, 2014.
Please make sure to register for the event using the following link if you will be attending the Fall Learning Session! http://events.r20.constantcontact.com/register/event?oeidk=a07e9kkxcx922...
We look forward to seeing you in Cincinnati in November!