Omphalocele: Diagnosis and Treatment

What should I expect after my baby is diagnosed with an omphalocele?

The fetal care nurse coordinators will call you to coordinate imaging studies, which may include fetal MRI, fetal echocardiogram or level II ultrasound. They will also schedule all prenatal consults with the specialized doctors who will care for you and your baby.

You will meet with a pediatric surgeon, who will explain in detail about your baby’s omphalocele. They will explain the plan of care for your baby, including the surgical procedure. They will take the time to answer any of your questions and discuss any of your concerns.

You will also meet with a pediatric cardiologist (heart doctor). This doctor will perform an ultrasound of your baby’s heart called a fetal echocardiogram They will discuss the fetal echocardiogram results and explain what this means for your baby.

Lastly, you will meet with a neonatologist. This is a doctor that specializes in taking care of babies. They will help explain the care your baby will receive right after delivery and within the coming weeks while in the neonatal intensive care unit (NICU).

You will continue to have ultrasounds and appointments with your OB doctor to determine the safest and best time to deliver your baby. When you deliver will depend on your baby’s age, growth, level of amniotic fluid and all test results.

How will I deliver my baby?

You can deliver your baby vaginally or by C-section. Talk with your MFM and OB-GYN to figure out the safest and best way to deliver your baby.

What can I expect after I deliver my baby?

Where your baby will stay

• Your baby will stay in the NICU after you deliver. In the NICU, your baby will have special care from highly trained medical staff.

Medications and medical care

• Your baby will stay in a warmer or isolette to help them stay warm. Your baby will also have monitors for breathing, heart rate, blood pressure and oxygen levels.
• Your baby might need to be put on a ventilator (breathing machine). This can help your baby breathe easier while they heal and grow.

Nutrition

• Your baby will have an IV for fluids and antibiotics. The IV is a tube that helps your baby receive medications, food and water. An IV is inserted into a vein.
• Your baby will have a nasogastric (NG) tube or an orogastric (OG tube). An NG tube goes through the nose down to the stomach. An OG tube goes from the mouth down to the stomach. Both tubes help make sure your baby’s stomach is empty before surgery. They can also be used to feed your baby eat until they are ready to eat by mouth.

How do we treat an omphalocele?

Your baby will need surgery to return the organ back into your baby’s belly.

• Primary closure. The surgeon will return the organs back in the baby’s body and close the hole. This is done if the omphalocele is small.
• Staged repair. This surgery is done if the omphalocele is large usually when the sac contains the liver or other organs. The surgeon covers the omphalocele in a protective covering called a silo. Over time, the surgeon tightens the silo so the organs return into the belly. When the organs are back in, the surgeon will close the hole.

What can I expect after surgery?

Medications and medical care

• Your baby will be on pain medication to keep them comfortable. The pain medication helps your baby rest and heal. As your baby heals, we will lower the amount of pain medication.
• If your baby is on a ventilator, it will be removed when your baby can breathe safely on their own.
• At first, your baby cannot eat by mouth. The intestines need time to heal. Your baby might have an IV called a central venous line (CVL) that lets us give food called total parental nutrition (TPN). As the intestines heal, your baby can slowly drink formula or breast milk.

Care from other specialists

• When your baby’s intestines heal, a feeding specialist will help your baby with feeding.

When can I take my baby home?

Usually, babies go home after 6-8 weeks (1 ½ - 2 months). Your baby might stay longer or shorter depending on their needs and how well they heal and grow.

Your baby can go home when they reach certain milestones (markers of good health and growth). This includes:

• Breathing on their own
• Gaining weight
• Keeping their temperature steady

What is the long-term outlook for my baby?

After surgery, your baby should be healthy and grow properly. They might need extra care from a specialist, such as a gastroenterologist (stomach and intestine doctor), feeding therapist or occupational therapist (a therapist who helps with feeding and learning everyday living skills). Your baby will also have follow-up care from the surgeon.

Rev. 1/2022. Mass General for Children and Massachusetts General Hospital do not endorse any of the brands listed on this handout. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.