BAKERSFIELD, CA.-Congenital Diaphragmatic Hernia is a rare condition that affects approximately one in 2500 pregnancies, according to Cherubs, a CDH organization. Two local moms whose children suffered from the condition are working to make sure more parents are aware of CDH and can find support.
Amber Bullard only held her baby Addison once in her 33 days of life, and Ali Sanford cherished the 11 days she spent with her son Easton, who doctors told her probably wouldn't survive the birth.
Both first-time mothers watched their children fight. Now, they are fighting to make more people aware of the condition that took their children away much too soon.
"She was beautiful. She had a head full of hair," remembers Amber Bullard. "The prettiest blue eyes."
Ali Sanford remembers her son's mouth and toes.
"He blew bubbles a lot," said Sanford. "I know it was from the machine but we thought it was funny, and his little toes always curled and stuff. He was perfect."
CDH is a hole in the diaphram which separates the chest and abdomen. The hole allows the intestines and other abdominal organs to go into the baby's chest, and occupy the space lungs need to grow. Surgeons work to place a patch or stitches over the hole.
"In a developing fetus, if the lungs get squeezed they don't grow as well,"said Dr. Hanmin Lee, Surgeon & Director of the Fetal Treatment Center at the University of California San Francisco. "So the main problem is the babies are born and the lungs are small. So they can't do the fundamental functions of the lungs as well."
Dr. Lee says about one-third of babies don't survive the condition.
"I had planned for her to come home," said Bullard. "I had her nursery done, I had diapers, I had wipes, I had clothes, I had toys, you know I had everything you want to have for a baby and I came home with nothing."
Yet the loss of their children has birthed a sisterhood. Bullard and Sanford have created a Facebook page for local parents grieving from CDH. So far they've identified eight kern county families.
"It's been so helpful to talk to other moms because they know exactly what I'm going through, said Sanford. "There are things that I talk to them about that I don't talk to my husband about."
They convinced Bakersfield Mayor Harvey Hall to proclaim April 19, 2015 as the first Congenital Diaphragmatic Hernia action and awareness day.
"Doing this stuff, if it can help other families, it's gonna in turn help us because we feel like our kids didn't die for nothing," said Bullard. "You know we were able to take that situation and make it beautiful."
Both moms are working with state Senator Fuller's office and other assembly members to declare a CDH awareness month here in California. Plus they are starting foundations to provide gas cards, care packages and other support to families dealing with CDH.
