PORTLAND – A woman who lost her son to a congenital condition is now helping other families affected by it.
The diaphragm works in harmony with the lungs, helping a person breathe. Diaphragms develop in the first trimester of pregnancy.
But sometimes a baby’s diaphragm doesn’t close and doctors don’t know why. About 13 weeks into her pregnancy Jamie Rowan found out her little boy Jacob’s diaphragm wasn’t closing.
"They just did an ultrasound and happen to catch it," she said. “He had a condition called Congenital Diaphragmatic Hernia."
Jacob died just 33 minutes after he was born.
The condition is more commonly known as CDH. Between 700 and 800 babies are born every year in the United States with CDH, said Dr. Martha Nelson, a neonatologist at Randall Children’s Hospital in Portland.
While it is a life-threatening condition, Nelson said the survival rate is on the rise.
“The survival for our CDH patients who have no other co-morbid conditions is approaching 86 percent," she said. Changes in technology and general awareness about CDH are helping babies and their families.
Rowan lost her little angel, but she finds comfort in sharing her story.
“He was beautiful," she said. "We had to enjoy what we could.” Now she helps other families affected by CDH, through a nonprofit support group called CHERUBS.
“You know, I can look into the eyes of another mother who had to go through the same thing I did,” she said.
CHERUBS will be holding a parade and walk on April 19 to help raise money and awareness for CDH. The event will be at Randall Children’s Hospital on the Legacy Emanuel campus in Northeast Portland.
KGW Reporter Collette Wieland contributed to this report.