Omphalocele

What are the signs and symptoms of an omphalocele?

The primary omphalocele symptom is abdominal organs that stick out of the abdominal wall, which is visible in testing before birth. Pregnant mothers typically don’t feel or notice anything during their pregnancy that would signal their baby has an omphalocele.

How do we diagnose an omphalocele?

We can often detect an omphalocele from a routine fetal ultrasound. Some conditions associated with omphalocele can trigger abnormal results on prenatal (before birth) blood screening tests.

We use a combination of imaging techniques to evaluate your baby while inside the womb with an omphalocele. This includes fetal MRI (to further evaluate the internal organs) and fetal echocardiogram (to evaluate heart structure and function). 

If it isn’t detected through tests during pregnancy, it is obvious when the baby is born.

How do we treat an omphalocele?

We treat babies born with an omphalocele differently depending on the size of the opening. Because an omphalocele can affect many organs, we have found that a team approach is best for those diagnosed with the condition. We offer comprehensive counseling and advice for parents with a baby diagnosed with an omphalocele. In addition to maternal-fetal medicine specialists, we work with experts from pediatric surgery, genetics, neonatology, radiology and, if needed, pediatric cardiology.

Omphalocele treatment after birth

Omphalocele treatment depends on how much of your baby’s abdominal organs are outside of the belly at birth. If only part of the intestines are outside or the hole is small, surgeons return them to the abdomen soon after birth and close the opening in the abdominal wall.

If the omphalocele is large and exposes multiple organs, or your baby has breathing problems, physicians usually take a phased approach. In the most severe cases, doctors will take time to allow the body to grow skin over the membrane. We then wait for the baby’s abdominal wall to grow so there is enough muscle to cover the hole. Sometimes we involve plastic surgeons to help provide innovative ways to cover the hole. To get enough muscle coverage to close the hole, we sometimes wait until your baby is 1 to 2 years old to close the hole. Currently, there are no fetal (in utero) interventions offered to treat omphalocele.

Another way to close giant omphaloceles is through a series of surgeries at birth called a Schuster procedure. We only offer this procedure to babies with giant omphaloceles who are clinically doing very well. There are some risks involved with squeezing all the organs back into the abdomen around the time of birth and so we are careful to only offer this to patients that fulfill specific requirements.

Long-term omphalocele survival rates and outcomes

Modern surgery has made life not only possible, but probable, for children born with this condition. The omphalocele survival rate for babies with no additional health issues is 90%. Those with other complications have a survival rate of 70%.

Babies with multiple organs exposed, as well as related issues such as smaller-than-average lungs, can experience ongoing breathing and heart problems. These children require long-term care and monitoring from a multidisciplinary team of specialists, such as the Pulmonary Hypoplasia Clinic.

Why choose us for omphalocele treatment?

Even though an omphalocele is a rare diagnosis, our team has extensive experience caring for it. Because we care for so many families with serious diagnoses, caring for rare conditions is common for us. And everything we do is personalized to your family’s needs.

Once your baby receives an omphalocele diagnosis, we create a plan to address your child’s specific needs and make sure you’re comfortable with the plan. You’ll receive counseling from experts in many different fields, all of whom have expertise in treating babies with an omphalocele. Our fetal care team will carefully monitor your baby’s progress inside the womb as they develop and work with other specialists within our hospital to begin our treatment plan as soon as your baby is born. We can deliver your baby safely within our dedicated Labor and Delivery Unit located within Children’s Hospital Colorado.

Our Colorado Fetal Care Center works closely with our Neonatal Intensive Care Unit (NICU), Pediatric Surgery Department and Urology Department to reach the best results for you and your baby. Our NICU has earned the highest designation — Level IV (four) — and is just steps away from where you’ll deliver the baby, so if your baby’s omphalocele is severe, we can offer life-saving treatments and surgery right away. You and your baby will be in the best hands, quickly.

In less severe cases, your baby will experience specialized NICU care where we’ll monitor the omphalocele and start our treatment plan at the absolute best time in their growth and development. Whether we apply treatment right away or sometime down the road, our experts will be with you every step of the way to help your baby grow up happy and healthy.

After you leave the hospital, our experts will continue to be an important part of your child’s growth and development. We have dedicated clinics that specialize in helping your child meet milestones and continue a healthy life.

Learn more about the Colorado Fetal Care Center, including our latest outcomes and how to find the right fetal care center for you.