CONGENITAL DIAPHRAGMATIC HERNIA

What is Congenital Diaphragmatic Hernia?

Your baby has a problem called "Congenital Diaphragmatic Hernia" or CDH. Congenital means "born with" and a hernia is a problem where something goes through a hole it is not supposed to. The hole is in your baby's diaphragm. The diaphragm is a muscle that helps us to breathe and keeps the organs in the abdomen from going into the chest cavity. This is a picture of how things are normally:

When your baby was very small (early in the pregnancy), there was a hole in the diaphragm. This is normal, but the hole usually closes by the end of the third month of pregnancy. In your baby's case, the hole stayed open. This allowed some of the intestines to go into the chest cavity. Since the intestines were in the chest cavity and not where they were supposed to be, the lungs could not grow in the normal space that they need (they had to share the space with the intestines). This means that the lungs are smaller than they should be. The intestines can also push on the other lung and keep it from growing fully and can sometimes keep the heart from growing normally. This is a picture of how things look in a baby with a left-sided diaphragmatic hernia:

How is Congenital Diaphragmatic Hernia treated?

Many times, the lungs of babies with CDH are so small that they have a very hard time breathing after they are born. Most of them need to be placed on a mechanical ventilator or breathing machine. They sometimes even need to be placed on temporary heart/lung bypass (called ECMO) if they have severe problems. The hole in the diaphragm is fixed after the baby is stable. This may range from a few hours to a few weeks after delivery. The surgery may be finished at one time or the baby may need more than one operation. After the operation, most babies are still in the intensive care unit for a while as their lungs get better. Some babies may need help feeding for a while with a tube for feeding. A few babies need another operation to help with feeding or other problems. Many babies with CDH do fine after leaving the hospital, but some have problems that need to be followed. All babies with CDH need regular follow up after going home from the hospital. This is especially important in the first few years after birth.