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). The collaborative is made up of clinicians from fifty-eight (58) centers from across the country and parents of children needing a Norwood (i.e. HLHS).
Last November, HLHS parents Erica Isakson (Colorado) and Matt Ulrey (Florida) attended Learning Session 10 for the first time after being awarded a parent travel scholarship. Their testimonials speak volumes to the work NPC-QIC is doing to improve the lives of children born with HLHS and their partnership with HLHS parents:
"Attending the NPC-QIC Conference was rewarding at multiple levels: First, being in a room of cardiac professionals and parents who are focused and are driven to improve the care of our HLHS kids, and their families, touched my heart and made me further grateful for these dedicated people. I also appreciated hearing that the current Collaborative statistics (which are really good!) still aren't good enough for these professionals. Our kids are fiercely being fought for behind the scenes (as well as on the front lines) and that is incredible to see, first hand. Finally, this group allows their centers to be vulnerable for the sake of improving the HLHS outcomes and that is amazing!
I look forward to be a contributing part of the Collaborative efforts at future conferences and at our center, and hope to share the work being done to encourage and bring hope to newly diagnosed, and current, HLHS families in Colorado and surrounding areas.
Thank you so much Sisters-by-Heart for the opportunity to meet so many amazing people and to continue my efforts to help our center help more HLHS families! It was great to finally meet all of you, too!" - Erica Isakson
"As a Dad of a 3 year old (Roman) with HLHS, I would like to start off by thanking Sisters by Heart for the great opportunity to attend the fall 2014 learning session. Leading up to the learning session I was a little nervous it was going to be a bunch of healthcare professionals speaking in a langue I didn’t understand. Once I got there I realized I could not have been more wrong. The learning session featured individuals from about 50 centers which included doctors, nurses, and parents. They all come together for one common goal - Improving care for patients with HLHS and their families. I am not sure what I enjoyed more either participating in the learning session – or getting to interact with other parents of children with HLHS of all different ages.
During the learning session it was clear that the medical professionals really valued our opinions. I was asked several different questions while I was there ranging from time of diagnosis all the way up to his current care. I know all HLHS parents remember that moment when they find out their child has a life threatening condition. During the learning session we spent hours discussing what could have made the time after that moment better. We heard great examples of things to do, and horrible examples of what to avoid.
I also was excited to meet with parents of other children with HLHS. I was able to meet parents with children of all ages from babies to college students. Hearing their stories provided me great hope. Generally as a parent of HLHS you are always looking so short term; this was a good opportunity to look long term. I thought it was awesome to hear everyone’s stories, especially the ones about the older children.
One last aspect of the conference I wanted to mention was how great it was to see hospitals working together to better care. It would be really easy for the top hospitals to keep all there data in-house and not share it with other hospitals, but that does not happen with this group. All involved are excited and even eager to share their best practices and success stories.
I came away with great comfort knowing there are some many intelligent people who care so greatly about our children, and look forward to being able to attend future learning sessions." - Matt Ulrey Dad of Roman age 3
|(Scholarship Awardees - Erica, Scott, and Carmen)|
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, however you are encouraged to reach out to your child's center prior to the learning session.
Sisters by Heart will be accepting travel scholarship entries until March 16, 2015. In order to be considered, please send an email with "Learning Session Scholarship" in the subject field to email@example.com with the following information:
HLHS child's name and DOB
HLHS child's hospital
Have you contacted your child's center to inquire about funding to attend the Learning Session?
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 March 23, 2015. Parents awarded scholarships will be responsible for making their own travel arrangements. If you have questions regarding the scholarship process, don't hesitate to email us at firstname.lastname@example.org.
|(Parent Dinner, Cincinnati 2014)|
If you're already planning on attending the learning session, please make sure to register for the event at http://events.r20.constantcontact.com/register/event?oeidk=a07eaftn5jz6f...
In order to receive the discounted room rate for the conference, please use this link to make hotel arrangements: http://events.r20.constantcontact.com/register/event?oeidk=a07eak0c1qi1cab2988&llr=kdgqiilab
|(Sisters by Heart Board Members, Cincinnati 2014)|
We look forward to seeing you in Cincinnati in May!