Note from Benjamin

My inspiration for founding BWB is personal. My aunt struggled to survive for three months in the NICU and my physician mother has told me many powerful stories about families’ heartbreaks during their child’s hospitalization. Delivered 12 weeks prematurely, my aunt was delivered by emergency cesarean section to save her mother from dying of an infection that could not be treated while pregnant. At less than 2 pounds and without the technological care now available in U.S. NICUs, the doctor informed my grandfather that his baby would not survive and advised him to focus on his ailing wife. Refusing to release either life, he ran from comforting his wife in another room to feeding milk to his tiny baby from an eyedropper. Amazingly, they both survived. These stories strengthened both my fascination with the NICU and my resolve to improve the care and experiences babies and families have there. 

 

While erasing crayon marks and unfolding crumpled pages at Portland’s Children’s Book Bank, I learned how early literacy is critical for school success and was distressed to learn that many low-income families own no books. As I further researched the topic, I was surprised to learn that 90% of brain growth occurs before many early literacy interventions begin at age five. I then learned that reading is especially important for NICU babies since they are at increased risk of poor developmental outcomes due to medical complications, family separation, and socioeconomic stressors. Finding deep comfort in books, I wondered if reading would help the more than 25% of NICU parents who develop Post Traumatic Stress Disorders related to their child’s hospitalization. I became determined to combine my love of books with my desire to improve the NICU experience.

 

In January of 2018, I launched the first BWB reading program at RCH. Recruiting four friends to join me, I led the team in fundraising, curating our mobile library’s book selection, and meeting one-on-one with families to provide them books and education on how and why to read with their NICU infant. Through numerous iterations, I worked with my team in developing the BWB reading program that has become a cornerstone of the RCH NICU’s family-centered care program and is Oregon’s first NICU reading program.

 

Since then, I have dedicated >1,500 hours to developing this early literacy work. I have recruited and trained 24 committed high school students, supported their hospital onboarding, and mentored them in meeting one-on-one with families to talk about how and why to read with their NICU infants. I have supported their leadership expertise within the organization, with roles ranging from ordering books with diverse content and authorship to analyzing program data. 

 

Through forging community partnerships with hospital leaders and philanthropists, writing grant applications, and building relationships with NICU families, I raised >$35,000 for NICU reading programs. I led my team in developing NICU reading programs at hospitals across Portland including RCH and St. Vincent Hospital with a third program launching at Portland Providence Medical Center this year. According to our surveys, our RCH program increased the number of reading families by 78%. BWB inspired “Randall Reads,” an integrated early literacy initiative throughout RCH and its outpatient pediatric clinics in which every hospitalized child receives a book and information on the importance of reading (additional $30,000 fundraised). 

 

At the RCH NICU, families come from across the Pacific Northwest and as far away as Somalia, speaking many languages. To better support this diverse population, I sought out data on the NICU’s most commonly spoken languages, recruited teammates speaking 8 different languages, and surveyed parents on their preferred books. As the program grew, I increased the frequency of volunteer sessions for family meetings, obtained books in multiple languages, and provided welcome packets (a book and educational materials to introduce families to NICU reading) to all families at hospital admission. 

 

In response to COVID-19, I identified new ways to serve the NICU community. Knowing that the pandemic added stress to an already difficult experience for NICU families and healthcare providers, I envisioned a friendly, multi-hospital read-a-thon competition to build hospital morale while supporting babies and families through reading. I contacted neonatology networks to invite NICUs to join, developed and shared a user-friendly read-a-thon process guide, and met over Zoom with healthcare providers to help plan their read-a-thon implementation. As the first US-based NICU read-a-thon and the only read-a-thon organized by youth, I collaborated with healthcare providers across the country and abroad to bring reading to families in 39 NICUs internationally from Billings to Burlington and Toronto to Texas. Before the read-a-thon, 66% of the 39 participating NICUs supported any type of NICU reading. After the event, 97% of hospitals are starting or further developing reading programs. BWB’s reading programs and read-a-thons have impacted an estimated 6,000 individuals. 

 

Through this work, I am excited that my team’s program is demonstrating that youth can eagerly put down their own technology to promote early literacy and help sick kids. Through this work, I learned that students are a highly motivated, creative, and dedicated group that can provide meaningful and sustained service to vulnerable NICU families without overburdening busy healthcare providers and financially strained hospitals. 

 

BWB has garnered strong local, national, and international interest. >120 NICUs have requested our NICU reading program process guide from Canada, England, Hong Kong, Italy, Malaysia, Qatar, Scotland, South Africa, and the US. Through these partnerships with healthcare providers, BWB is expanding the scope of care provided to babies and families so that hospitals not only treat illness, but also embrace literacy as integral to health, and families as central to their child’s well-being.

 

Through effort and with practice, I honed my ability to communicate with donors to describe BWB’s mission and value in providing unique programs that leverage youth’s passion and creativity to serve patient and family needs. I learned to share research with groups of healthcare professionals and to speak with them about why this work matters for families. As I have learned more and more about the losses and triumphs that occur daily in the NICU, I have become inspired by the courage of families and the compassion of healthcare providers who work tirelessly to make life better for their patients.

 

On my first day volunteering in the NICU, a mother told me, “Reading to my baby never crossed my mind before BWB.” I am determined to bring this impact of reading to NICU families across the globe.