Last month I participated in the International Children’s Advocacy Network (iCAN) Summit in Lyon, France. iCAN is a worldwide consortium of children’s advisory groups that work in unison around the world to provide a voice for children and families in medicine, research, and innovation.
My micro preemie turns 10 today! She was born at 23 weeks gestation, weighing only 1 pound and 4 ounces and she was just 11 ¼ inches long. It was a long journey, filled with trauma, fear and a lot of love. Happy Birthday to my micro preemie!
It was an honor to present at the 2022 Pediatric Academic Societies (PAS) Meeting in Denver last weekend. This event was very special to me because I was presenting the research on the paper that I published in the Journal of Perinatology as lead author, as part of the International Neonatal Consortium, called “The culture of research communication in neonatal intensive care units: key stakeholder perspectives.”
The NICU Parent Network (NPN) and National Perinatal Association (NPA), stand in solidarity with our European neonatal and perinatal colleagues as they struggle to provide care and support to the most vulnerable, medically fragile babies and their families. The Relief Fund for NICUs in Ukraine, a fundraising effort providing targeted support for the Polish NICU parent organization, the Coalition for Preemies – Koalicja dla wcześniaka are providing support and we want to help.
This year I was able to collect over 100 toys for children hospitalized over the holidays at Maria Fareri Children’s Hospital in New York.
Wednesday November 17th was World Prematurity Day, and boy did we celebrate! The New York Bridge State Authority was super supportive and agreed to light up the Mid-Hudson Bridge (in New York) purple to help us spread awareness. It was beautiful.
In honor of World Prematurity Day, the Franklin Delano Roosevelt Mid-Hudson Bridge in Highland, New York, USA will light up in PURPLE at dusk on November 17, 2021 to raise awareness for premature babies like my daughter, Joy. Will you watch it live with us? You can watch it live on my Facebook page: https://www.facebook.com/JenniferDegl
Our paper in the Journal of Perinatology looks at the relationship and communication between neonatologists, NICU nurses and parents in the neonatal intensive care units and how that affects clinical research. The NICU key stakeholder survey results discussed in the paper suggest that there are considerable opportunities for improving communication with parents and nurses about clinical trials on neonatal units.
Three parents share personal experiences, often raw and painful, to urge the neonatal nursing community to increase actions, whether in research, quality improvement initiatives, or policy, to propel the work forward by enhanced collaboration with mutual trust and understanding so all NICU babies thrive from new drug development.
As an about-to-be first-time father, Ted Yang felt he had it all: married to the love of his life, a fulfilling and lucrative career, and an instant family with triplets on the way. Things turned around quickly and he and his family were thrust into the NICU world and their lives would never be the same. Read “Table for Five” to learn more about Ted Yang’s journey.
It all changed in the blink of an eye with premature birth, a death, and years-long struggle to keep a child alive. Born at 24 weeks, the tiny Yang Triplets had the odds stacked against them.
How far does a father go to hear his daughter laugh? As far as it takes.
A story of hope, Ted Yang shares his fight, his fears, and how the experience of fatherhood redefined him, personally and professionally. This is a story of a family, Ted and Christine Yang’s family, thriving in spite of obstacles and setbacks.
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