NICU Parent Network

NPN Board Member Jennifer Degl presented on Bronchopulmonary Dysplasia at Critical Path Institute (C-Path)'s inaugural Global Impact Conference, in Washington, D.C. This event brought together more than 300 industry leaders, regulatory agencies, academic experts, and patient advocacy groups, all dedicated to advancing drug development and regulatory science for rare diseases like BPD.

The need for action is urgent; with each passing day, more babies are stillborn. The U.S. has both the capacity and the responsibility to strive for better outcomes for moms and babies. Without progress in improved data collection, research, education, and awareness, we will remain greatly limited in our understanding of why babies are dying at this rate and what we can do to combat this crisis! That’s why we need to pass the SHINE for Autumn Act, H.R. 5012/S.2647 before the end of the 118th Congress?we call on Congress to see this through. To contact your lawmakers, go to https://lnkd.in/gVvxUt-K #SHINEforAutumnAct #PregnancyandInfantLossAwareness #StillbirthAwareness #StillbirthPrevention #MaternalHealth #MaternalHealthMatters #PrenatalCare

Stillbirth is 15X more common than Sudden Infant Death Syndrome (SIDS). While safe sleep campaigns have been very successful at preventing SIDS deaths, sadly, similar efforts have not been directed towards stillbirth awareness and prevention. The U.S. has the capacity and the responsibility to strive for better outcomes for moms and babies. Without progress in improved data collection, research, education, and awareness, we will remain greatly limited in our understanding of why babies are dying at this rate and what we can do to combat this crisis. That’s why we need to pass the SHINE for Autumn Act, H.R. 5012/S.2647?we call on Congress to see this through! A list of current SHINE House & Senate co-sponsors can be found here - https://lnkd.in/gT5YCC4s #SHINEforAutumnAct #PregnancyandInfantLossAwareness #StillbirthAwareness #StillbirthPrevention #MaternalHealth #MaternalHealthMatters #PrenatalCare

Stillbirth tragically claims the lives of over 21,000 babies each year in the United States. Many of these deaths are preventable and are happening in healthy, low-risk pregnancies. This is why we need to pass the SHINE for Autumn Act, H.R. 5012/S. 2647 which would take critical steps to invest in improved stillbirth data collection, research, education, and awareness all of which are required to better understand stillbirth and identify strategies for prevention. To contact your lawmakers, go to https://lnkd.in/gVvxUt-K #SHINEforAutumnAct #PregnancyandInfantLossAwareness #StillbirthAwareness #StillbirthPrevention #MaternalHealth #MaternalHealthMatters #PrenatalCare

In recognition of Pregnacy and Infant Loss Awareness Month, please join us for a profound and reflective session at NICUnity, sponsored by Chiesi, titled "Belonging: How We Grieve—Insights in Faith and Multiple Births." This session will explore the intersection of grief, faith, and the unique challenges faced by families experiencing multiple births and loss in the NICU. Gain valuable insights into the diverse ways individuals and communities cope with loss, and how faith and professional support can play crucial roles in the healing process. This event is sponsored by Chiesi.

Join us live today at 12 pm EST!

A Note From Our Executive Director: October is here and during this month we pay special tribute to all the families who have experienced a pregnancy or infant loss. Too often bereaved families suffer in silence and while we want to draw attention to the experiences during this month it is important to remember that these families need to be seen, heard, and validated every day of the year. My own grief journey began when my husband and I had to make the gut-wrenching decision regarding medical termination that reduced our quintuplet pregnancy to triplets. This decision haunted me for the better part of a decade and because of the stigma and even hatred directed toward people who make this decision I did not share this part of my story until just a few years ago. The pain, shame, and self-loathing I carried inside was crushing. Our experience with loss did not end there as we lost one of our triplets, Zoe at 14 months old, followed by a miscarriage years later. I've learned a great deal over the last 17 years as I've unpacked and processed the trauma associated with each loss, very unique in their own ways. To read more, follow this link - https://conta.cc/3XYBthT

At least 25% of stillbirths occurring in the United States are preventable?that’s 5,250 babies that could be saved! This is why we need to pass the SHINE for Autumn Act, H.R. 5012/S. 2647 which would take critical steps to invest in improved stillbirth data collection, research, education, and awareness all of which are required to better understand stillbirth and identify strategies for prevention. SHINE would ensure more families return home from the hospital with their babies safe in their arms. Please contact your legislators and urge them to support SHINE. A list of current SHINE House & Senate co-sponsors can be found here - https://lnkd.in/gT5YCC4s #SHINEforAutumnAct #PregnancyandInfantLossAwareness #StillbirthAwareness #StillbirthPrevention #MaternalHealth #MaternalHealthMatters #PrenatalCare

Today we honor those precious ones who were lost entirely too soon. Their impact is immeasurable, and today across the globe, we recognize and remember them. At 7PM in your time zone, we invite you to join us in the International Wave of Light by lighting a candle in remembrance. Please know you are not alone. Support is always available through compassionate communities and organizations. Visit our member directory to find resources: https://lnkd.in/gcHYWgxW #WaveOfLight #PregnancyAndInfantLoss #YouAreNotAlone

We hope you'll join us tomorrow! NICU Parent Network is hosting NICUnity: Belonging How We Grieve, Insights in Faith and Multiple Births.