Newborn Health Initiative Champion Jennifer Degl recently penned a blog highlighting September as NICU Awareness Month, and also sharing her perspective as a mother of preemie. September 9th, 2017 marked the fifth anniversary of the day that Jennifer brought home her daughter, Joy, from the NICU. "In many ways it seems like yesterday, yet in many ways it also seems like an eternity ago. I’m curious if any other preemie or NICU parents feel the same.Do you remember your baby’s discharge date as I do? Do you also feel as if it’s a day to commemorate your child and celebrate their strength and will to live? Today, Joy is a happy and healthy (with some minor medical issues caused by her premature birth) little girl, and she also loves the fall! Autumn will always symbolize strength and new beginnings for our family."
Newborn Health Initiative champion Jennifer Degl recently penned an article in the International Neonatal Consortium (INC) newsletter, sharing her story and experience as the mother of a premature baby. In the piece, Degl emphasizes the importance of INC’s role in increasing the number of neonatal drug therapies available in order for this extremely vulnerable population to grow up and live happy, healthy lives. “With proper timing and communication strategies in place, I believe that the INC can work to increase the neonatal drug options and availability of those drugs, so that we can improve the lives of our future neonatal population,” wrote Degl. “I am excited to be a part of such important work.”
Last week, Reps. Billy Long (R-MO) and Ben Ray Juján (D-NM) re-introduced legislation -- The Promoting Life Saving New Therapies for Neonates Act (H.R. 2641) -- to boost the amount of life-saving treatments available for at-risk newborn babies. Approximately 200,000 newborns in the United States require admission to a neonatal intensive care unit every year. Among those who survive, one in five faces health problems that persist for life such as cerebral palsy, intellectual disabilities, chronic lung disease, and deafness. But unfortunately, current incentives have not been sufficient to stimulate novel therapies for the neonatal population due to numerous challenges.
Last night, Comedian and Television Host Jimmy Kimmel gave a heartfelt, emotional opening monologue detailing his newborn son Billy's emergency surgery to correct defects in his heart. A few hours after his birth, a nurse noticed a murmur in Billy's heart. Kimmel noted that the hospital team started doing some tests to see whether it might just be fluid in the lungs. Doctors then pivoted to his heart, and performed an echocardiogram that found Billy was born with a heart defect called tetralogy of Fallot with pulmonary atresia. Kimmel recounted the events leading up to and after the surgery.
Newborn Health Initiative Champion Jennifer Degl's Blog on experience at the 3rd Annual FDA-INC Neonatal Scientific Workshop
A recent study reported in the Associated Press has found that a surge in U.S infants born with symptoms of withdrawal from heroin or strong prescription painkillers is driven largely by rising drug use among women in rural areas. "Newborns whose mothers use these drugs during pregnancy are at risk for seizures, excessive crying, problems with breathing, sleeping and feeding and other withdrawal symptoms," the article notes. "Treatment sometimes includes methadone and babies may need to be hospitalized for weeks or months."
A recent article in the British Journal of Clinical Pharmacology (BJCP) highlights the history behind why there is currently a severe shortage of medical innovation for newborns. "The need for paediatric studies persists and new efforts to increase the study of drugs in neonates and to improve the efficiency of these studies are underway," the study says. "We can look to a future when neonatal drug therapy has the same solid data base that is provided for treatment of older children and adults."
Incoming Chair of AAP, SOATT Section Focuses on Advancing Therapeutics and Technology for Neonates in First Newsletter Post
In the Fall 2016 American Academy of Pediatrics (AAP) Newsletter, incoming Chair of the Section on Advances in Therapeutics and Technology (SOATT) Dr. Mitchell Reid Goldsten focuses on the need to improve medical innovation for neonates. "There is no excuse for lack of acceptable pediatric devices or medications due to inadequate resources for research and development," he writes. "The Promoting Life Saving New Therapies for Neonates Act of 2015 (S. 2041 and H.R. 5182) is an example of legislation designed to bridge the gap... This legislation would mark a promising step forward in creating appropriate incentives to bring new treatments forward to benefit this vulnerable population."
According to the March of Dimes recently released 2016 Premature Birth Report Card, the preterm birth rate in the U.S. has worsened for the first time in eight years. According to an article highlighting the report, the U.S. received a “C” grade and said newborns have different chances of surviving and thriving based on the circumstances of their birth. Nationally, preterm birth rates were higher in non-white ethnicities, the report showed, and Hispanic populations were 1.1% higher than white populations, while black populations were 1.5% higher.
It sure seems now is more important than ever to pass the Promoting Life-Saving New Therapies for Neonates Act!
Jennifer Degl, author of From Hope to Joy: A Memoir of a Mother's Determination and Her Micro Preemie's Struggle to Beat the Odds and champion of the Newborn Health Initiative shares her experiences as a Keynote Speaker at the 32nd Annual NANN Conference last week in Palm Springs.
"[NICU nurses] are not only concerned with saving and caring for our premature and medically fragile babies, but they also want to make sure that we all leave the NICU with as little bruises as possible," Ms. Degl writes. "There is no way to leave the NICU unscathed by our experiences after watching our babies (and often ourselves) endure so much pain and suffering, but I learned that the NICU nurses are always looking for newer and better methods to minimize it for us all."