What is CDH? - Reliable Resources

I've listed a few good links from some of the major CDH treatment centers in the U.S. as a starting point for learning about CDH. They are also listed on the Links & References Page.

The Children's Hospital of Philadelphia (CHOP)

• What is Congenital Diaphragmatic Hernia?
• Congenital Diaphragmatic Hernia (CDH)
• An Excellent Video About CDH

Children's Hospital Boston

• Congenital Diaphragmatic Hernia

University of California, San Francisco (UCSF)

• Congenital Diaphragmatic Hernia

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support is a CDH support group. CHERUBS recently published their CDH research site, which has extensive information and links to research articles. This is a great resource, and can be found here.

On a side note, I've also added the option to post comments here and on the Polls page by clicking on "_ comments" in the black bar at the bottom of each post. Please feel free to add your comments and personal experiences where you can. Reading "real-life" information from other families can be extremely beneficial to those learning about CDH. Thanks!

Types of CDH

Congenital Diaphragmatic Hernias are divided into two groups:

Posterolateral (Bochdalek)

OR

Non-Posterolateral (non-Bochdalek)

In medical terminology, "posterior" refers to the back. It's opposite is "anterior", meaning front. "Lateral" refers to the side. So "posterolateral" would be a defect involving absence of the diaphragm along the back and side.

The diaphragm is a dome-shaped muscle, almost like a parachute in shape. Its two halves are joined by a ligament in the center. Each half of the diaphragm may be referred to as the right diaphragm or left diaphragm. You will hear CDH commonly referred to as "left-sided CDH" or "right-sided CDH", in reference to which side of the diaphragm the hernia is located in and which abdominal organs have herniated through it.

Illustration of a Normal Diaphragm

(http://healthguide.howstuffworks.com/diaphragm-picture.htm)

Normal Diaphragm

(http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&partid=1359&rendertype=figure&id=cdh-ov.F1)

[Pober et al 2006], "Posterolateral (Bochdalek) hernias comprise approximately 80-90% of all CDH and appear to fall into two types: a) a diaphragmatic defect accompanied by absent or extremely deficient rim of posterior and lateral musculature (see Figure 2a); and b) a diaphragmatic defect with an intact rim of posterior and lateral musculature. About 85% of Bochdalek hernias occur on the left side, about 10% on the right, and approximately 5% are bilateral."

Types of CDH

(http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&partid=1359&rendertype=figure&id=cdh-ov.F2)

The Non-Posterolateral, or non-Bochdalek hernias are diaphragmatic hernias involving the anterior (or front) or central portion of the diaphragm (see figure above). Non-Bochdalek hernias are further broken down into subtypes.

1. Morgagni (Morgagni-Larrey) hernia - Morgagni hernia is an anterior hernia near the sternum that can result in the herniation of liver or intestines into the chest cavity (see Figure 2b). 2% of all CDH are Morgagni hernias. These hernias frequently do not cause symptoms in the newborn period.

2. Other anterior hernias associated with Pentalogy of Cantrell - These rare and severe types of hernias are found in individuals with Pentalogy of Cantrell (which also includes defects in the supraumbilical midline abdominal wall, lower sternum, diaphragmatic pericardium, and heart).

3. Central hernia - This hernia is a rare diaphragm defect involving the central tendinous (e.g., amuscular) portion of the diaphragm. The entire rim of diaphragmatic musculature is present (see Figure 2c). [Pober et all 2006]

Most of the time, when discussing CDH on this site, I'll be referring to Bochdalek hernias, either right-sided (RCDH) or left-sided (LCDH), unless otherwise specified, since these are the most common type. The GeneReviews article on the Links and References pages was heavily referenced in this post. Please check it out for further details.

Welcome to Sofia's CDH InfoSpot

I created this site to be an educational resource on topics related to Congenital Diaphragmatic Hernia (CDH). Whether you are a parent of a CDH survivor, expecting a baby with CDH, a health care professional, or have never heard of CDH, I hope you will learn something here.

When my daughter was diagnosed with CDH, I was familiar with the diagnosis. However, I still had a lot to learn. The internet can be a wonderful resource, if used properly. It can also be a scary place to go searching blindly. There is a lot of misinformation to be found. As a health care professional, I had the advantage of being able to sift through the "good" (a.k.a reliable, peer-reviewed) information and the bogus information out there. This site is to serve as a collection of that good, reliable information.

That being said, it is merely a collection of information; not advice. What I write here pertains only to my personal experience as a parent and should never be taken as medical advice. The first thing you will learn about CDH, is that every experience is unique. No two babies are the same, and no case of CDH presents in exactly the same way with exactly the same outcomes.

Let me walk you through the site. On the left side of the main page you see facts about CDH as a permanent reference. In the posting section, I'll post on many topics related to CDH and related research articles and references. In the menu bar across the top, you find links to "Sofia's Story", "Polls", and "CDH Links and References".

"Sofia's Story" is my daughter's blog site. It is our detailed story beginning during my pregnancy to the present.

"Polls" is the page were you'll find various polls I've created for this site to collect information from the readers. It should be very interesting - check it frequently!

"CDH Links and References" is the page where I'll continually post helpful links relating to CDH and is also the place I'll reference any information used on this site.