Digestive and Gastrointestinal Conditions
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In omphalocele (pronounced um-FAL-uh-seel), the belly wall does not form all the way before birth. Organs that are normally in the belly (abdomen) are outside the baby’s body. The organs are covered by a thin, clear membrane instead of muscle and skin. Most often, the bowel, liver or both organs are involved. The membrane is called the omphalocele sac.
Sometimes omphalocele is confused with another condition called gastroschisis. In that condition, there is a hole in the belly wall next to the umbilical cord. The bowel is not covered and is outside the body. These 2 conditions differ greatly.
Omphalocele at Seattle Children’s
We have treated many children with omphalocele at Seattle Children’s. Our doctors helped develop some of the surgical treatments that have greatly increased the survival rate for some types of omphalocele.
If you would like an appointment, talk with your pregnancy care provider for a referral to our Prenatal Diagnosis and Treatment Program. If you would like more information or have a referral, call 206-987-5629 to schedule an appointment.
- If an ultrasound during pregnancy shows that your baby has an omphalocele, our Prenatal Diagnosis and Treatment team can do a detailed evaluation. We work with your obstetric team to plan your care. Finding a problem early gives you more time to learn about it, decide about care and prepare for what lies ahead.
- Careful coordination with your birth hospital helps arrange the special care your baby will need during delivery, at birth and as they travel by ambulance to Seattle Children’s shortly after birth. Our transport team of doctors, nurses and respiratory therapists are national leaders in safely moving fragile newborns.
- Our Level IV Neonatal Intensive Care Unit (NICU) is skilled and equipped to care for the sickest newborns. We will coordinate your baby’s care through every step – as they have surgery, move to a regular hospital room, go home and return to Seattle Children’s for clinic visits.
- Our medical team focuses on how your child’s treatment will affect how they grow and develop. We base treatment plans on years of experience and the newest research on what works best and most safely.
- After your baby goes home, we will check on your child's health and provide treatment and advice as needed. If your child has ongoing problems with breathing or feeding, our Surgery Pulmonary Follow-Up Clinic can help.
- Our pediatric surgery team is one of the most experienced in the nation, with excellent outcomes. We carefully assess your child to decide the best treatment for them.
- Our Surgery, Neonatology and Occupational Therapy Departments are national pioneers in treating children with “giant” omphalocele. This is omphalocele that is several inches across. Our outcomes for children with giant omphalocele are excellent, due to decades of experience.
- About half of the babies with omphalocele have other health problems at birth. These may affect their heart, lungs, digestive system or urinary tract. In 2018, U.S. News & World Report ranked Seattle Children’s #1 in the Northwest and among the nation’s best for these and other programs.
- Children differ from adults in how they react to illness, pain, medicine and surgery. That is why our surgeons are all board certified in pediatric surgery.
- Finding out your baby has an omphalocele can be scary. We take time to explain your child’s condition. We help you fully understand your treatment options and make the choices that are right for your family.
- Our doctors, nurses, child life specialists and social workers help your child and your family through the challenges of this condition. We connect you to community resources and support groups.
- Your child and family will also get care from experts in nutrition, feeding, infant development, lactation support and other specialties.
- At Seattle Children's, we work with many children and families from around the Northwest and beyond. We can help with financial counseling, schooling for other children in the family, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.
Seattle Children’s leads research in the lab and in the clinic to improve treatment and quality of life for children born with conditions like omphalocele.
- Our newborn specialists are leaders in research to improve outcomes for babies born very early or with complex conditions. See Pushing Limits, Saving Lives.
- We study and test innovative mechanical heart devices that support children with breathing problems or very weak hearts. Our goal is to develop safer, more effective devices.
- We work to find the safest, most effective ways to reduce stress in the NICU and to relieve pain. Learn more about Seattle Children’s Neonatology research.
- Drs. Delphine Yung and Kendra Smith do research on new treatments for pulmonary hypertension, which sometimes affects babies with omphalocele.
- Our patients have the option to take part in research studies of promising new treatments. These are called clinical trials.
Symptoms of Omphalocele
You will not notice any symptoms of omphalocele before your baby is born – though some babies with omphaloceles have other health problems that may cause symptoms before birth.
After birth, you and your baby’s doctor will see organs from the baby’s belly sticking through the belly button area covered by the layers of the umbilical cord (the omphalocele sac). Your baby may have only a small hole and a small bulge of organs that comes through, such as a part of the intestine. Or there may be a large hole and a large bulge with several organs, like the intestine and liver, on the outside.
Your baby may not have any symptoms. When babies do have symptoms, they usually don’t come from the omphalocele itself, unless the sac is torn. Usually, the symptoms come from other problems that can happen at the same time as omphalocele. About half of the babies with omphalocele have other birth defects, including problems with the:
- Digestive tract
- Urinary tract
Some babies with omphalocele are born with lungs that are a bit smaller than normal. One symptom of this may be rapid breathing. In some case, babies may need to use a breathing machine (ventilator) to help their lungs.
If your baby’s lungs are small, it may be hard for them to breathe when the organs are pushed back into their belly. The organs push up on the chest and squeeze the lungs. Your baby’s doctor will carefully examine your baby for this problem and use the information to help plan treatment.
Some babies have chromosome abnormalities that cause a variety of other symptoms. If this is the case for your child, your baby’s doctor will talk with you about other symptoms your child might have.
In most cases, omphalocele is seen during a routine ultrasound exam before a baby is born. If this happens with your baby, the team at Seattle Children’s Prenatal Diagnosis and Treatment Program can work with you to get ready for birth and plan for the treatment your baby will need. You can meet with a pediatric surgeon and other experts before your baby’s birth.
Your doctor may talk with you about having tests before your baby is born to check for other problems with development. These may include:
- Ultrasound of your baby’s heart (fetal echocardiogram) to check its shape and how it is working
- Genetic testing
After your baby is born, they will likely have ultrasounds to check their heart and kidneys.
There are 2 main ways to treat the omphalocele itself:
- Treat with antibiotic cream and wait for the skin to grow over the membrane (called “paint and wait”)
The best treatment for your baby depends on the size of the gap in their belly wall and how well they are doing.
If the gap in the belly wall is small to medium sized and your baby’s heart and lungs are working well, surgeons may be able to close the omphalocele right away. They push the organs through the gap in the muscle and sew the muscle closed. They may be able to create a belly button for your baby at the same time.
If the gap in the belly wall is large or if your baby has any heart or lung problems, it may be too risky to push the organs inside their small body right away. In these cases, doctors use “paint and wait.” The sac covering the omphalocele is “painted” with an antibiotic cream. Over time, the membrane thickens up, and your baby’s skin grows over the sac. This may take several months.
If a baby has small lungs along with a large omphalocele, they will likely need the paint-and-wait approach.
When your baby is stable and breathing well, doctors wrap the sac with an elastic bandage, like the Ace bandages you can buy at a drugstore. The elastic of the bandage slowly pushes the bulge back into your child’s belly.
In most cases, babies do not need to be in the hospital for the whole paint-and-wait treatment. Our nurses will teach you how to change the bandage and care for your baby.
How long your baby stays in the hospital depends on whether they:
- Need long-term oxygen to support small lungs
- Also have a heart defect
- Are feeding well
It may take several months for the special bandage to push the bulge into your child’s belly. This may seem like a long time, but paint and wait works very well in children with large omphaloceles. It has greatly reduced the problems babies used to have when surgeons tried to push all the organs back into the belly right away.
As your baby grows, there is more room inside the belly for their organs. Breathing becomes much easier as a baby’s lungs and belly get larger. When all of the contents of the sac are pushed into your child’s belly, the surgeon will talk with you about a surgery to close the hole that remains.
Some babies with large omphaloceles are born with lungs that are smaller than normal (pulmonary hypoplasia). This can cause problems with breathing and often means the baby needs support for breathing. How long a baby needs breathing support varies, but 3 to 6 months is common. Some babies may need:
- A tube in their nose to provide extra oxygen.
- A breathing machine (ventilator).
- To be on the breathing machine long term. If so, they will need a breathing tube into their windpipe (tracheostomy). This is very rare.
Some babies with omphalocele have high blood pressure in their lungs (pulmonary hypertension). If your baby has this problem, they may need oxygen and medicines for a while to help blood flow better from their heart to their lungs. Our heart and lung specialists will make sure your child gets the care they need.
If your child has ongoing lung problems, they will get care after they leave the hospital from our Surgery Pulmonary Follow-Up Clinic or lung specialists at Seattle Children’s.
Our feeding therapists make sure your baby gets their nutrition in the best way for them. If your baby has surgery or a large omphalocele:
- They may need a tube that goes into a vein to give fluids. This is called an intravenous (IV) line.
- After surgery, a few babies can have breast milk or formula right away.
- Most babies need to get nutrition in other ways until they recover from the surgery. They may be fed through a tube that goes into a large vein (PICC line or central line) or through a feeding tube that passes through the nose (NG tube) or mouth (OG tube) into the stomach. This continues until your baby can get all nutrition by mouth.
Our nurses and lactation specialists do all that we can to support you in giving your baby breast milk. To keep your milk flowing and to build a milk supply for your baby, we help you with breast pumping and storing your milk. When your baby is ready, our nurses and feeding therapists help with the transition to feeding by bottle or breast.
Feeding can be a problem for some babies born with omphalocele.
- In many babies with large omphaloceles, their stomach contents flow backwards into the esophagus. This is called gastroesophageal reflux (GER). GER can make feeding harder and worsen some breathing symptoms. Your child may need medicine or (rarely) surgery to manage reflux.
- Our occupational therapists provide feeding therapy for babies who are still learning feeding skills. Some babies have feeding problems related to GER. Many need a nose-to-stomach tube for at least part of their nutrition. This provides gentle, safe feedings until a child grows out of GER and learns to eat safely.
As your baby’s health improves, they move from the NICU to a regular hospital room and then home. The size and severity of omphalocele can vary widely. So can the length of the hospital stay. Some babies may need to be in the hospital for a week. Others stay for many months.
- If your baby has surgery as a newborn, they will stay in the hospital until they have recovered from the procedure and are eating well.
- If your baby has the paint-and-wait technique, they will be in the hospital while you learn how to do the dressing changes.
With either treatment, your baby will stay in the hospital until they can gain weight without IV nutrition. By the time they go home, many babies still need a feeding tube for at least part of their nutrition and may need a tube in their nose for oxygen. Our nurses will help set up the supplies and equipment you need. You will have plenty of time to practice all your baby’s care before going home.
About half of babies with omphalocele have other health problems at birth. These may affect their heart, spine, urinary tract or kidneys. Some children have chromosome abnormalities.
Our team will carefully examine your baby. We use the information to help plan treatment and refer your child to other Seattle Children’s specialists as needed.
Some children will have no long-term problems after being treated for their omphalocele. Other children have ongoing health issues such as:
- Heart defects. If your child has a heart condition, they will get care from experts in our top-ranked Heart Center.
- Small lungs (pulmonary hypoplasia), mainly in children born with giant omphalocele. A team of experts at our Surgery Pulmonary Follow-Up Clinic checks your child's health over the long term and provides treatment and advice.
- Feeding problems. If your baby has feeding problems after going home, our feeding therapists can help. If your child has ongoing GER, they may be followed long term by our gastroenterology experts.
- Problems related to their nervous system, such as developmental delays. Babies who had a long stay in the NICU may benefit from our neurodevelopmental experts.