Adapted from CHERUBS:
What is CDH?
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every
2,500 births (1,600 cases in the U.S. each year). The cause of CDH is
not yet known. The diaphragm is formed in the first trimester of
pregnancy and controls the lungs' ability to inhale and exhale. CDH
occurs when the diaphragm fails to form or to close totally and an
opening allows abdominal organs into the chest cavity. This inhibits
lung growth.
Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do
survive, most will endure long hospital stays, feeding issues, asthma
and other problems. A few of the survivors suffer from severe long-term
medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there
is very little research being done and virtually no media coverage.
Every baby with CDH is different.
What works for one baby, may not work for another. There is no reliable
indicator to predict if a baby will do well or not. Babies with no
diaphragm and little lung sometimes do well, while babies with 2 full
lungs can sometimes do poorly. Head to lung ratio is used to determine
whether to intervene prenatally through in utero treatments but it does
not indicate a true survival rate. "Lung function" is also not an
indicator as there are many other factors at work with these children
such as kidney function, brain function, other birth defects, possible
complications or infections while in the hospital, etc.
In addition to newborns, there is a subset of individuals affected that
may escape detection prenatally or at birth but may be discovered much
later. Because they may be more mildly affected, they may have less
serious complications but can also their own unique sets of issues.
These include:
Late Presenting Congenital Diaphragmatic Hernia (Children)
Late Presenting Congenital Diaphragmatic Hernia (Adults)
Congenital Diaphragmatic Eventration
Parents can help their CDH'ers by becoming informed and educated about
Congenital Diaphragmatic Hernia so that you can make the best decisions
for your child.
Learn more at: http://www.cherubs-cdh.org/
No comments:
Post a Comment