CDH Awareness Month - April 2025

One thing I will never stop doing on this page is bringing awareness to congenital diaphragmatic hernia - because someone will be just like me, with a diagnosis in hand endlessly scrolling social media to find a glimmer of hope.

I pray Everett’s story will give you hope.

So what is CDH?

CDH is a life threatening birth defect that affects 1 in 3,200 babies and is considered "rare".

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and prevent lung growth.

The average global survival rate is ~50%.

The cause of CDH is still unknown, but it has been associated with several genetic anomalies.

Vitamin A diet deficiency has been known to cause CDH in lab rats.

The link between CDH and certain drugs like thalidomide, quinine, phenmetrazine, and nitrofen has been suggested but not proven.

Approximately 20% of CDH pregnancies are also diagnosed with polyhydramnios.

Around 30% of CDH infants require extracorporeal membrane oxygenation or ECMO (full life support).

CDH is typically detected at the 20 week anatomy scan via ultrasound.

However, about 10% of babies go undiagnosed and is not discovered until after birth. However, there have been instances where young kids, teens and adults go undiagnosed until later in life. CDH is such a spectrum of severity.

Despite receiving the 20 week anatomy scan, my son’s CDH was missed.

Because of his defect size, my son required a synthetic patch (Goretex) to be used to close up the hole in diaphragm.

CDH kids often come with double diagnosis' such as heart issues. My son also was born with pulmonary hypertension.

Long term complications are dependent on multiple things.

Common complications are under developed lungs, poor weight/growth, ADHD, reoccurrent diaphragmatic hernias, neuro developmental delays, hearing loss, cardiac problems, Gl problems and more.

But it's very individual.

Even with the diagnosis, there is so much hope. Some of my favorite resources are found on instagram at:

©mytinyhero

@forehadley

@survivingch

©the_eccf