Even with high tech ultrasound, there are some infants diagnosed after birth rather than before.  They must receive a “crash course” in neonatal care and are usually in shock their baby has been diagnosed with congenital diaphragmatic hernia.  We will still send these families our Comfort Care Packages with information and items to help them through the NICU experience.  Please know, you did nothing wrong to cause this and sometimes depending upon when the ultrasound was done, the issue may not have been present or viewed.  Ultrasound goes through layers of blood, fluid, muscle and sometimes it does not always show everything.  In most cases it does, but in some it may not.  Also, occasionally, an organ may stop others from herniating into the chest cavity and through the birth process, or later in pregnancy the organs move.  We have had mother’s diagnosed prior to birth who tell us on ultrasounds the organs have moved below and above the diaphragm.

We also hear from families whose child was born and went through newborn screening, passing as a healthy baby and went home.  Symptoms such as rapid breathing, severe reflux and vomiting have them into a pediatrician’s office and through more testing they discover the baby has CDH.  They too, must also go through surgery to correct and close the diaphragm and move organs back where they belong.     The good news with these older infants is they have lung function and usually have relatively short stays in the hospital recovering from their surgery.

We have also heard of older children, teens and adults who were diagnosed much later.  One was featured on “Frontline for Hope” series with Saint Louis Children’s Hospital.  She was 16 and in a severe car wreck and diagnosed with CDH as they were assessing her injuries at the hospital.  We have heard of adults diagnosed with CDH through a random xray or cat-scan performed looking into other issues.

We provided this page here to give assurances to those diagnosed later on, that it isn’t abnormal and in most all cases, surgery is performed and there is a full recovery.  The advantage of a later diagnoses is that those who have congenital diaphragmatic hernia usually have very good lung function.

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