Today, Senator Jean Fuller (R-Bakersfield) presented Senate Resolution 32 to declare April as Congenital Diaphragmatic Hernia Awareness Month. The resolution passed unanimously and will help bring more awareness to this deadly birth defect.
Congenital Diaphragmatic Hernia (CDH) affects 1 in every 2,500 births and about 1,600 cases per year in the United States. This rate is similar to cystic fibrosis and spina bifida, other well know birth defects.
CDH is caused when the diaphragm fails to form completely, leaving an opening for abdominal organs to move into the chest cavity.
Babies born with CDH endure extended hospital stays in intensive care with multiple surgeries. In addition, surviving CDH patients often endure long-term complications, including pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflux, feeding disorders, and developmental delays.
“It is our hope that the more attention we can bring to this deadly and devastating birth defect will lead to more resources for finding the cause, more effective treatments, and ultimately a cure,” said Fuller.
The cause of CDH is still unknown and it does not discriminate based on race, gender, or socioeconomic status. Federal support for CDH research funding by the National Institute of Health for 2017 is approximately $4,000,000.
Senator Fuller also introduced advocate Amber Bullard. Amber has been a dedicated advocate for those affected by CDH. It is through her efforts that April is recognized as CDH awareness month by the United States Congress, and nearly all 50 states.
Amber lost her daughter, Addison Rose, to CDH in 2015 at just 33 days old.