Our 9th annual NECCA meeting titled “Single Ventricle: The fetus to four” was another tremendous success! This meeting at the Equinox Resort Hotel & Spa in Manchester, Vermont on October 21st and 22nd was our largest to date. With over 75 members and representatives from almost every practice in the region, our host from the University of Vermont, Scott Yeager welcomed us to western Vermont. Amazing autumn weather filled both days and provided a beautiful backdrop for the meeting.
Naomi Gauthier delivered her final President’s message to the NECCA membership. Naomi has served as the president of NECCA since its inception in 2009-2010. Her message this year focused on the importance of asking the right question and trying to avoid confirmation blindness. By demonstrating the frequency of inattention in our daily lives, Naomi asked for NECCA and our diverse specialties to take the opportunity to notice those aspects of our patients’ lives that will allow us to provide the common goal of better care.
A review of our subcommittee initiatives really demonstrated the growth that our organization has made over the last 8 years. Examples include the development of the aortopathy working group (Ron Lacro and Jonathan Flyer), multi-institutional research on bicuspid aortic valves (Jonathan Rhodes & Laura Mansfield), to the creation of advocacy materials on the nehearts.org website for our patients (Sharon O’Brien and Pip Hidestrand). We also heard from our Fontan working group that they are launching a multi-institution prospective trial. This is such an exciting time for NECCA with many opportunities for collaboration for our members! Thanks to the work of many people (Rob Elder, Rahul Rathod), reliance agreements have been started to simplify IRB approval and to streamline the work of clinical research. Many of the 5 active NECCRF grant projects are nearing completion and the investigators presented their progress reports. We look forward to seeing the manuscripts of these tremendous research projects in the next year.
Our communications committee also crafted a survey to determine if there was interest in developing another NECCA event. The overwhelming response was that another event in the Spring focused on working groups and a social event would bring a significant amount of interest. Based on this feedback, we will begin working on an event of this type for 2019!
Our first featured speaker was Wayne Tworetzky from Boston Children’s Hospital. Wayne has been at the forefront of fetal cardiac intervention from its infancy and provided an overview of its role in critical AS. Using this quote, “Statistics tell us what is probable and anecdotes tell us what is possible”, Wayne delivered an amazing talk on the future directions of single ventricle heart disease.
Emile Bacha followed, providing the surgical perspective to single ventricle palliation and the complex decision making that goes into the creation of a 2 ventricle circulation. Welcomed back to New England, Emile reminded many of us of the thoughtful surgical decision making and team based approach that he has continued to develop over the years. Joining our keynote speakers were Tal Geva (BCH) and Steve Sanders (BCH) for a panel discussion moderated by Jonathan Flyer (UVM). This was rated as one of the highlights of the weekend. This robust clinical discussion focused on the complex decision making between single and biventricular repairs in borderline ventricles.
Steve Sanders, one of NECCA’s most generous members in terms of his time and teaching over the years, gave a presentation on the pathologic features of single ventricles. As he has done in prior years, Steve was kind enough to do a pathology session on Sunday morning from the cardiac registry at BCH. These sessions always receive incredible feedback from the participants!
As a special addition the program this year, we were thrilled to welcome Peter Lang to our optional dinner program on Saturday night. Peter spoke on the history of single ventricle palliation and told the story of how he became “Bill Norwood’s cardiologist”. It was an amazing venue at the base of Equinox mountain and we are so grateful to Peter for joining us and reminding us all why “we love this stuff!”
Our final speaker of the weekend was Rahul Rathod, one of the members of the NPC-QIC involved in the project to reduce interstage mortality. Rahul gave a great overview of the current state of single ventricle palliation and the interstage mortality data that has raised the question of mortality reduction with digoxin. The collaborative effort highlighted by the NPC-QIC can be modeled by NECCA and eventually as we develop our Fontan registry for the working group, there may be an opportunity to create a more comprehensive single ventricle registry in New England!
As we complete another successful meeting, we begin to turn our attention to the 2018 meeting! Rob Elder (Yale) and Brooke Davey (CCMC) will be our hosts in 2018 and announced that next year’s meeting will be at the Water’s Edge Resort and Spa in Westbrook, CT on October 13 and 14th!
Finally, we would like to acknowledge our Executive Board. We had 3 members cycle off of the EB this year and we wanted to say thank you to Anne Marie Valente, Adrian Moran, and Phyllis Pollack, while we welcome Brooke Davey and Mike Epstein to the EB! We also wanted to thank Naomi Gauthier for her many years of service as President of NECCA. This meeting really showed how far we have come with the incredible number of QI initiatives, research projects, and opportunities for multi-institutional collaboration. Our progress to date was the ultimate tribute to Naomi!
We look forward to seeing you all next year and we hope that many of you will reach out to our various subcommittees and working groups to help move NECCA forward.