July 30th is Gastroschisis Awareness Day and NBDPN is helping Avery’s Angels Gastroschisis Foundation (AAGF) celebrate its 10th Birthday!
Throughout July and August 2019, AAGF is calling attention to the need for support, lifelong treatment, and research, to improve the lives of all living with gastroschisis. AAGF and NBDPN urge clinicians, researchers, public health partners, and the general public to be aware of crucial needs and knowledge gaps. We are called upon to:
Identify the causes of gastroschisis and address upward trends:
-Studies show that gastroschisis rates in live born babies have been increasing nationwide. Key Findings.
-Research suggests that inflammation plays a role. Key Findings.
-Despite progress in this area, the exact cause of gastroschisis is still unknown. Recent findings suggest that mothers out of their teen years who experience stressful life events early in pregnancy may have an increased risk. More research is needed to better understand stress as a risk factor. Read more about it.
Focus on lifelong care:
-It’s good to celebrate the improvements in early treatment that mean people born with gastroschisis are living longer!
-People with gastroschisis need providers to be prepared to care for them throughout adolescence and adulthood.
-Birth defects surveillance systems can help provide the data needed to illustrate long term outcomes, assess health care utilization, and reveal gaps in access to needed care.
Meet families where they are:
-There is no ‘best’ birth defect. No neonatal surgery is easy. Families need more than pat phrases like “out of the NICU and in the clear.” Parents want to be empowered to take on their children’s ongoing health needs and the risks associated with abdominal wall trauma.
A well-informed caregiver is the best care coach.
-Families need providers to explain the facts and to acknowledge both the immediate and the lifelong challenges.
-The child with gastroschisis is a whole person. Care teams must consider long term needs, such as IV access, from the first encounter. Medical providers build trust and confidence when they recognize the family as the expert on the home front.
This July and August, NBDPN highlights Avery’s Angels’ “decade of dedication” and calls attention to the continuing need for birth defects surveillance and research in support of the gastroschisis community. Find the AAGF representative for your state and spread the word across your social media platforms!