Living Your Best Life with HIE

Podcast Episode 9

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Meet Betsy Pilon

Betsy Pilon, Executive Director at Hope for HIE

Betsy Pilon is the Executive Director of Hope for HIE, a global nonprofit based out of Michigan, dedicated to awareness, education and support for neonatal and pediatric acquired hypoxic ischemic encephalopathy. Hope for HIE serves over 6,000 families worldwide, through a comprehensive support network.

After her own son, Max, was born in 2012 with HIE, she could not find any parent-focused resources on HIE. Eventually, she found a small group of families gathering on social media. Working with the existing group, she led the efforts to start the grassroots nonprofit foundation in 2013 to ensure no family faces HIE alone. As a result, Facebook recognized her in 2019 for her community building efforts with Hope for HIE.

She brings her strong background in healthcare marketing and communication, working with large regional and national health systems such as Henry Ford Health System and Trinity Health, to growing collaborations with researchers and clinicians in the neonatology and pediatric neurology community, working to improve the quality of life for children and families affected by HIE.

She is passionate about neurodevelopment, early intervention, parent education, and building patient and family-centered care and partnerships. She advocates for improving communication among providers, patients, and families, positively impacting outcomes in healthcare and education. She also serves on the Newborn Brain Society Board of Directors leading the Communication and Networking Committee.

Max’s delivery and diagnosis of HIE

Betsy was 37 weeks along in her first pregnancy when she realized that she hadn’t felt the baby move. After she did not feel any kicks during her kick counts, she was admitted to the hospital. She quickly went for an emergent cesarean section due to the baby’s minimal variability.

The NICU team was present for Max’s arrival and quickly intubated him. As he was transferred downtown to a higher level of care, Betsy’s husband followed closely behind. The team quickly determined his diagnosis of HIE (Hypoxic Ischemic Encephalopathy) and started the standard of care treatment, Therapeutic Hypothermia or whole body cooling. Therapeutic Hypothermia needs to be initiated within 6 hours of delivery to achieve the most beneficial outcomes for the baby.

With HIE, there are 2 phases of injury. The primary phase when the hypoxic ischemic injury occurs followed by the secondary phase which occurs 12-36 hours after the injury. Therapeutic hypothermia is the current treatment regimen focused on preventing further damage during the secondary phase.

Max was placed under whole body cooling for the typical 72 hours, followed by the slow rewarming phase. On day of life 5, as most parents of baby’s diagnosed with HIE, Betsy and her husband awaited the results of Max’s MRI. Betsy describes this time as extremely traumatic for parents as they anxiously wait to hear the MRI results and a more definitive idea of how their baby is doing neurologically.

Max’s MRI showed a moderate to severe injury. Betsy went to work trying to learn more. She had never heard of HIE or whole body cooling and began looking for resources, education and support. She quickly realized that there was a very limited amount of information or support groups which made her feel even more unsettled.

Max came home after spending 3 weeks in the NICU and they started their journey full of follow-up appointments. After finding a small presence for HIE on social media, 3 bloggers encouraged Betsy to look into the Hope for HIE website. She was thankful even for the small amount of support for her personal well-being and mental health.

Promoting Change for the Better

After noting the gap in education and supportive resources for HIE families, Betsy felt driven to work for a change. She had so many unanswered questions after hearing Max’s diagnosis and did not want other families to endure the same frustrations.

Even with the technological and medical advancements for HIE, there is still a lag in knowledge for care and treatment beyond cooling. Therapeutic Hypothermia decreases death and disability, but there needs to be more research done focusing on prevention and additional therapeutic treatments.

Betsy wanted to have a platform to teach other families how to better navigate through the HIE journey with so many follow-ups and insurance questions. Working with the Hope for HIE founders, she shared their vision to create a non-profit that provided dedicated support for HIE families and has helped to expand it worldwide to over 6,000 families.

Hope for HIE

Hope for HIE’s mission is to foster hope for families affected by HIE through awareness, education, and support. They want to close the common gaps many HIE families have encountered during their NICU stay, post NICU time, and through the full range of HIE outcomes.

Hope for HIE continues to bring awareness for HIE and they declared April as the global month of awareness. To bring awareness, they have capitalized on what the HIE community needs through care, communication, and connection. With care, their goal is to continue to improve Family-Centered Care and equitable messaging in the NICU for HIE patients and families. They also want to improve communication from providers so HIE is not such a taboo topic in the NICU. And by building connections within the HIE community, families can learn from each other and find support.

Their goal for the “Hope for HIE” website was to change the presence of common HIE information found online and shift the focus to provide more accurate knowledge by involving the medical community. They have also established a platform for parents to connect based on each family’s individual HIE journey.

By providing support for HIE families, they have support groups for newly diagnosed families, for those who have suffered a loss, as well as for families who are well into living life after being touched by a HIE diagnosis.

The medical advisory board has several hot topics set up specifically for HIE awareness month in April, but they continue to offer them monthly thereafter. They also are focused on continually improving the quality of life for HIE patients as well as the incidence of HIE by partnering with researchers.

Max’s Journey

Through Max’s journey, Max has been blessed with a great pediatrician and neurologist who have helped to get their family adequately connected with the services he has needed along his journey. By building “positive partnerships” with Max’s care team, it has helped Max excel and get the best available resources for him. Betsy and her husband have empowered Max within his own journey and they also encourage him to self-advocate.

According to Max and Betsy, he is living his best life. Max is a happy and healthy 3rd grader. He does have permanent impacts from HIE, but they have learned to build good relationships with his medical and educational teams. By doing so, they continue to have high expectations for him, while also removing any potential barriers for him along the way.

Lessons Learned

Betsy gained empowerment and a sense of hope from the original families she connected with via social media after Max’s diagnosis. She has learned through her connections and now from their own personal journey, that individual children with HIE and families can thrive despite disabilities.

The Pilon family has learned that although you cannot control the circumstances and outcomes with HIE, you can come together and see other HIE families thrive. Although, they never want Max to suffer, they have learned by watching other families to always celebrate whatever journey you are on. By connecting with others, you can work together to improve things for others and turn your pain into a purpose.