Amber Jones isn't even three years old yet but already has battled the fight of her life. She was born with Congenital Diaphragmatic Hernia also known as CDH. For the Jones Family, everyday is an unknown future.
"We don't know if she'll relapse we don't know if she all of a sudden will collapse." Surgery is required after birth since the baby needs its lungs to breathe.
"The diaphragm is the large muscular organ that helps us breathe and it basically divides the chest cavity from the abdominal cavity."
And with CDH the abdominal organs like the small intestine, stomach, and liver, go up into the chest- slowing down the baby's lung development. "Some babies don't make it. One in 25,000 do." This rare defect is usually detected during pregnancy.
"This is something picked up on the fetal anatomy ultra sound that's done about 18 to 20 weeks of pregnancy. This is an important birth defect we really try looking closely for on every patient because we don't want to miss is. Babies do much better if you know about it ahead of time." But an early detection doesn't stop families from facing many challenges.
"She has chronic lung disease; it's hard for her to breathe at times. She does have cyanosis where she turns blue."
"It’s scary one moment the next moment we're glad she's there. There have been times where we thought she stopped breathing and we didn't know what was going to happen." Since, one in every 2,500 babies are born with CDH, the Jones Family encourage expecting mothers to get checked out.
CDH is considered a high risk pregnancy and requires a specialized team of doctors and nurses to be present during birth.