The diaphragm is a thin muscle that separates the chest from the belly. It moves up and down during breathing to help the lungs empty and fill with air. Sometimes when the baby is developing before birth, the muscles in the diaphragm do not grow together completely. This leaves an opening (hole) that allows the intestines to move up into the baby’s chest. The pressure of the intestines pushes the heart slightly to one side. This is called diaphragmatic hernia.
Congenital diaphragmatic hernia (CDH) can occur on either side of the chest, but most of the time it is on the left side. Babies who have CDH have lungs that have not grown normally, making it hard for the baby to breathe after birth.
The exact cause of CDH is not currently known. Studies show CDH happens in 1 in every 4,000 live births. It is congenital, meaning that it happens before your baby is born.
You may have a routine prenatal ultrasound done while you are pregnant to learn about the health of your baby. A diaphragmatic hernia is usually found then, but sometimes it is discovered when the baby is born. CDH is a life-threatening emergency. That is why it is very important for your delivery to take place in a skilled hospital setting where the medical staff can take care of the baby at birth. The survival rate for babies born with CDH is around 70 percent.
A baby with CDH cannot be treated before birth. Your doctor will have a detailed plan to watch your pregnancy very closely. Ideally you will be able to have a normal vaginal delivery. If a cesarean section (C-section) is needed your doctor will discuss this with you. It is important to call your doctor if you have any questions or concerns during your pregnancy.
Additional tests, including fetal MRI, fetal echocardiogram and amniocentesis, may be recommended to assess the severity of the CDH and to find possible chromosomal abnormalities.
If this problem is found while you are pregnant, you will continue to receive care from your doctor and may be referred to the Ohio Fetal Medicine Collaborative (OFMC) for further treatment or consulting.
Through the OFMC, you will see a doctor who specializes in taking care of high-risk patients. You will also meet with a pediatric specialist at Nationwide Children’s Hospital to learn more about your baby’s care after he or she is born. Nurse coordinators will be available to help answer your questions and concerns; guide you through your pregnancy; and prepare you for what to expect.
You will deliver your baby at a hospital that is prepared to care for high-risk babies.
At the delivery hospital, a neonatologist (a doctor who specializes in treating newborns) will supervise your baby.
All babies who have CDH will need to have surgery. Your baby will have surgery once he or she is stable. It may be days or weeks before surgery can be done.
The pediatric surgeon will make an incision in the abdomen just below the rib cage. The surgeon will guide the organs back into the belly and close the opening in the baby’s diaphragm. If the hole is large it will be closed with a patch
After CDH surgery, your baby will receive care in the hospital’s neonatal intensive care unit (NICU). Your baby will need to be on a breathing machine until he or she is fully recovered from surgery. Other treatments your baby may need after surgery include:
Regular feedings are started once the intestines are fully healed after surgery. Feedings of breast milk or baby formula are started very slowly with either the bottle, nasogastric tube (NG) or a gastrostomy tube. The tube is removed when your baby’s intestine begin to work properly.
The total length of time your baby will stay in the hospital will vary based on whether your baby is born with other health issues or if there are complications after surgery. It may be several months or more depending on your child’s recovery after surgery.
You may be able to take your baby home once he or she is feeding well; gaining weight; and when the lungs are working well.
Sometimes, even though the doctors and nurses do everything possible, the baby’s small and damaged lungs do not heal and the baby dies. This is the greatest risk of diaphragmatic hernia. The medical staff will always keep you informed and is available to answer any questions or concerns.
Your baby will need regular follow-up appointments to measure growth, development and nutrition. You will want to find a local pediatrician to take care of the routine checkups, immunizations, and doctor’s visits. The OFMC nurse coordinator can help if needed. The pediatric surgeon will follow up with your baby’s surgical needs.