The idea behind the Newborn Brain Society began in 2015. With several Neonatal Neurocritical Care programs launching all over the world, many questions came to mind about how effective they really were. How were these programs communicating? What are the resources and structures needed to make them successful? If a group of people is interested in establishing such a program, do they need to start from scratch or are there resources available to assist in this process? Is it possible to create a forum where neonatologists and neurologists can communicate about how such programs should be built and run?
These were some of the questions Mohamed El-Dib, MD discussed with Terrie Inder, MBChB, MD and An Massaro, MD. A few months later, they planned their first Neonatal Neurocritical Care Special Interest Group (NNCC-SIG) meeting. The aims of this group were to provide a forum for communication surrounding Neonatal Neurocritical Care (NNCC) clinical care pathways, to introduce opportunities for networking, and to establish lasting relationships to serve as a foundation for future collaborations. They also aimed to provide educational opportunities for newly-established programs and other neonatologists/ neurologists who were interested in providing neuroprotective care in the NICU setting.
The first NNCC-SIG meeting took place on the morning of May 1st, 2016, in Baltimore, MD. That meeting allowed leaders of 8 North American Neonatal Neurocritical Care programs to gather and discuss their experiences, how their programs were set up, and what types of babies they managed. This first meeting attracted 85 attendees. Although only 4 countries were represented, 23 US states were involved. Since that date, the SIG has been able to host an annual meeting during the Pediatric Academic Society (PAS) conference. Each year, during this meeting, an area of common interest stimulates group discussion and a panel of specialists add valued perspectives to the conversation. Two of these discussions have resulted in review articles published in the journal of Pediatric Research. This outreach has also grown exponentially, with the number of attendees increasing to almost 200 from 20 different countries.
Apart from the annual meeting at PAS, the NNCC-SIG was able to consolidate an increasing number of interested neonatologists, neurologists, fellows, residents, nurses, scientists and allied health into one email list. This list grew to exceed 500 members who discussed very important and influential topics. This was an amazing resource that connected a wide range of knowledgeable, yet friendly, experts to ensure that questions were answered with various perspectives almost instantaneously.
As the numbers and interest grew over the years, it became increasingly clear that there was a need for a distinct society. Discussions about creating the Newborn Brain Society started in late 2018. Throughout 2019, a group of about 40 founding members brainstormed and outlined the mission, vision, and goals that this society would uphold. Then they took it a step further and shifted the focus of this group from simply exchanging ideas to actually collaborating in education, research, QI, and the development of clinical guidelines. To ensure the success of this society, they knew they needed a multidisciplinary approach involving physicians, nurses, allied health professionals, and scientists. The importance of including trainees and students to make this a sustainamble effort also became evident. Another group that was critical to include in the society was parents who could contribute their valuable experiences and challenges to help children like theirs. In addition, the founding members acknowledged the importance of educating the public and raising awareness about the challenges and needs this field is facing.
The dream to create this society was made possible by the founding generous donations from the Platt family in honor of Jaxon Platt. The Newborn Brain Society was officially incorporated in August 2019 and was open for membership in January 2020. While it will continue to function side-by-side with the NNCC-SIG, the aim is to eventually merge the two groups into a stronger entity with one main structure and function.