Specialized care for babies with an abdominal wall defect that can lead to feeding problems
Gastroschisis is an abdominal wall defect that occurs in about 1 in 2,000 live births in the United States, according to the Centers for Disease Control and Prevention. With proper and timely treatment, nearly all babies with gastroschisis survive.
As the leading pediatric academic health system on Florida’s west coast, Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, has experience diagnosing and treating gastroschisis. Our OB-GYN, maternal-fetal medicine, neonatology, surgery, intestinal rehabilitation specialists and other experts have successfully treated many babies with gastroschisis.
What is Gastroschisis?
Gastroschisis (pronounced gas-troh-skee-sis) is a birth defect where a hole in the belly of the baby — the abdominal wall — allows the intestines to move outside the baby’s belly. The hole generally is to the right of the belly button and may be large or small. Sometimes other organs, such as the stomach or liver, may also move outside of the baby’s body. When the intestines move outside the body, they are exposed to amniotic fluid and may become irritated, causing them to swell and sometimes shorten. The small opening may restrict blood flow and cause the intestine to twist, sometimes leading to intestinal blockage and long-term feeding problems once the baby is born.
How is an Abdominal Wall Defect Diagnosed?
Gastroschisis is a birth defect that occurs early in pregnancy and may be diagnosed through prenatal testing. A blood test with high levels of a protein called alpha-fetoprotein may lead to further testing, such as an ultrasound. In cases with little prenatal testing, gastroschisis may not be detected until after birth.
When the diagnosis occurs during pregnancy, maternal-fetal medicine specialists will closely monitor your pregnancy. They will distinguish between gastroschisis and other abdominal wall defects such as omphalocele, a birth defect in which membrane-covered organs extend through a hole in the baby’s belly.
When gastroschisis is diagnosed during pregnancy, expectant mothers may be referred to the Fetal Care Program at Johns Hopkins All Children’s, which develops a comprehensive treatment plan by a team of specialists from pre-birth through delivery and follow-up. Our specialists will monitor your baby’s growth in the womb, the amount of amniotic fluid and assess the risks of preterm delivery. You will be able to ask questions about how your baby will be treated after birth.
How is Gastroschisis Treated?
When your baby is diagnosed with gastroschisis, we will encourage you to plan delivery at Bayfront Baby Place, which is on the third floor of Johns Hopkins All Children’s Hospital and has easy access to our neonatal intensive care unit (NICU). Our NICU carries the highest ranking from the American Academy of Pediatrics, Level IV.
After birth, the baby will begin to lose water and body temperature from the intestines, so the gastroschisis birth defect is treated within hours or days after the baby is born. If the hole in the belly is small and the intestines are not too swollen to fit, a pediatric general surgeon will operate and place the organs back inside the abdomen and repair the hole within a few hours. If the hole is large or the intestines are too swollen, the repair may be done in stages with multiple procedures. The surgeon may place the intestines in a bag called a silo to reduce heat loss and allow swelling to reduce until the repair can be completed.
Babies with gastroschisis often need additional care after the repair because of damage to the intestines caused by the amniotic fluids. They generally stay in the NICU for several weeks, and in some cases months. Babies with gastroschisis often have challenges with nursing and feeding, including digestion of food and absorption of nutrients. They may need to receive nutrients through an IV line and antibiotics.
The intestinal rehabilitation team at Johns Hopkins All Children’s has experience helping babies with gastroschisis deal with conditions such as short bowel syndrome and other challenges with nursing and feeding. Intestinal rehabilitation is the science that stimulates the ability of the intestine to adapt to different and unexpected medical and surgical conditions, including gastroschisis, by a specialized team of providers including neonatologist, gastroenterologist, pediatric surgeon, intestinal rehab dietitian, pharmacist and speech therapist. It encompasses pharmacological, dietary, and surgical options that can maximize intestinal adaptation and function for best outcomes.
What Causes a Baby to Have Gastroschisis?
The causes of the gastroschisis birth defect are unknown, though genetic and environmental factors may be involved. Gastroschisis has become more common in recent years, but doctors do not know why. Some risk factors for gastroschisis researchers at the Centers for Disease Control and Prevention have identified:
- Mothers under age 20
- Alcohol and tobacco use
- Urinary tract infection early in pregnancy
What Are Long-term Effects of Gastroschisis?
Children with gastroschisis and other abdominal wall birth defects may experience a low growth rate, acid reflux and difficulty absorbing nutrients (dysmotility). In general, this improves over time except in cases of short bowel syndrome, which is a loss of function in the small intestine.
In some cases, children may develop an abdominal hernia, which may require more surgical procedures to repair.
The surgical repair from gastroschisis may leave a scar, which may make children self-conscious or embarrassed as they grow older. You may need to provide emotional support, particularly during adolescence.
We know that you want the best possible care for you and your unborn child. Our team is happy to assist you with your questions.
Read stories about how our Maternal Fetal Medicine program is changing lives:
The Fetal Care Program at Johns Hopkins All Children’s offers coordinated personalized care for complex and high-risk pregnancies from before birth through delivery and into follow-up care. It brings together whatever combination of specialists needed for the fetal anomaly or condition being treated. When the Fetal Care team met with Becca, Michael and the gestational carrier, Becca wasn’t sure how it would go.
Drew Rideout, M.D., Ph.D., surgical director of the Intestinal Rehabilitation Program at Johns Hopkins All Children’s, talks about the experiences that motivated him to become a doctor and how collaboration is key to caring for patients.