What is CDH?
Congenital diaphragmatic hernia (CDH) occurs in an unborn baby when there is a hole in, or incomplete formation of, the diaphragm (the muscle under the lungs that is responsible for breathing). This hole allows the abdominal organs (eg. spleen, liver, intestines, stomach) to move into the chest, and prevents the lungs from developing normally because of the lack of space to grow. The defect can occur on the left side, right side, or both sides. The defect is usually discovered on ultrasound before the baby is born.
CDH affects about one in every 2,500 babies (1600 cases in the U.S. each year), and occurs as often as cystic fibrosis and spina bifida, yet most have never heard of it. On average, only 50% of these babies survive.
That is why we’ve made this our mission. We believe that it’s our duty to spread awareness about CDH and offer all the information and support that we can. As our mission statement reads, our goal is to help families find the best care, a supportive community, and a hope-filled future.
To get you started in your introduction to CDH, we’re going to cover a few basics. We recommend visiting our FAQ page as well. There is a wealth of information concerning CDH, types of treatments, what you can expect, and much more.
Are all baby hernias a form of CDH?
No. Infants can be born with a variety of different hernias, some more serious than others. There are reducible hernias, incarcerated hernias, strangulated hernias, and more. Each variety requires a different medical approach. The good thing is that nearly every variety of hernia can be and usually is detected in ultrasounds before birth.
Knowing this information beforehand gives doctors the opportunity to be prepared to address the issue as soon as the baby arrives. Any form of baby hernia will be addressed by the doctors and medical staff, but depending on the type it could be the difference between a quick fix or something more serious, like CDH.
There are actually two types of CDH: 1) A Bochdalek hernia is a hole in the back of the diaphragm (90% of CDH cases are this type). 2) A Morgagni hernia involves a hole in the front of the diaphragm.
How do I know that my baby has CDH?
Normally, CDH is discovered on ultrasound before your baby is born. However, it sometimes is discovered after you give birth, but that is far more rare. Once identified, parents are referred to Maternal Fetal Medicine for more evaluation and more tests. A fetal echocardiogram will be ordered to evaluate the baby’s heart, and a fetal MRI to determine which organs, specifically the liver, are in the baby’s chest. Sometimes doctors can also get an idea of your baby’s lung size, though often it is difficult to see with all the organs in the way. High resolution ultrasounds will be performed frequently to determine the lung to head ratio and look at other important factors.
If not caught during a routine ultrasound or other special exams, you can keep an eye out for the following signs and symptoms. Each child may experience symptoms differently, but possible symptoms of a diaphragmatic hernia may include:
Fast heart rate
Cyanosis (blue color of the skin)
Abnormal chest development, with one side being larger than the other
Abdomen that appears caved in
*A baby born with a Morgagni hernia may or may not show any symptoms.
Other Baby Hernia Signs & Symptoms
If you think that your child may have a hernia, call your doctor right away. You can also run through this checklist created by kidshealth.org. Again, it’s important to note that not all baby hernias are CDH. These signs and symptoms can be related to a wide variety of baby hernias.
Is there a bulge present when your child is straining, crying, coughing, or standing, but absent when your child is sleeping or resting? This could indicate a reducible hernia.
Is the bulge present all the time, but with no other symptoms? This could be a hydrocele or something else.
Has the groin area suddenly begun to swell? Do you notice any discoloration of the bulging area or a "swollen" abdomen? Is your child irritable, complaining of pain, constipated, or vomiting? These are signs of an incarcerated hernia, which calls for immediate attention. See a doctor immediately or take your child to the emergency department.
Is the area swollen, red, inflamed, and extremely painful? Has your child developed a fever? These might be symptoms of a strangulated hernia. Call your doctor and then go directly to the hospital emergency department.
A Message of Hope
As we stated earlier, our mission here at Tiny Hero is to help families find the best care, a supportive community, and a hope-filled future. We preach hope. We hold onto hope. We believe in hope. Should you find yourself in the position of having a child or loved one diagnosed with CDH, know that you are far from lost. We are here with great resources and a fantastic network. If you’re just wondering where to start, we recommend learning as much as you can about the process. Also, we would encourage you to visit our guidelines on what to ask your doctor about CDH and his or her experience in working with CDH patients.