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Tom and Tiffany had been trying to get pregnant for five years. When Tiffany missed her period and then a pregnancy test was positive, they were overjoyed. Eighteen weeks later, however, they were horrified.
Tiffany had gone to the doctor's office for a routine ultrasound. The ultrasound technician was chatty and cheerful until suddenly she was silent. The doctor came and was obviously straining to find the right words to tell them that their long-awaited child had a condition called gastroschisis (pronounced gas-tro-skee-sis). Their future daughter would be born with her lower digestive tract outside her body, necessitating immediate surgery followed by a long stay in neonatal care.
What Is Gastroschisis?
In gastroschisis, a hole forms to the right of the umbilical cord, where the future belly button will be. It's due to a hernia, a failure of the muscles in the abdominal wall to close. Depending on the size of the hole, just the small intestines, or also the stomach and liver, may fall out. The hole in the baby's tummy allows a chemical called alpha-fetoprotein, made in the fetal liver, to accumulate in the amniotic fluid in the womb. This protein can pass through the placenta into the mother's bloodstream. Because of this, not just ultrasound but even a simple blood test from a draw of the mother's blood can be a strong indication of the problem.
Gastroschisis requires medical intervention as soon as the baby is born. While the baby is waiting for surgery, the exposed internal organs are placed in a "silo bag." The organs have to be placed back into the abdomen gradually so that the abdomen does not have increased pressure suddenly. Doctors squeeze the intestines back through the hole near the belly button over the course of several days, and then close the hole over the intestines and other internal organs. Doctors used to close the wound with hard sutures to create a recognizable navel. Now the preferred method is to place a special dressing over the wound so that the baby's skin grows back without creating a scar.
Because of the need for gentle treatment, it takes more than one operation to ensure that the organs stay where they need to be. Newborns may spend many vulnerable weeks in the neonatal intensive care unit. Because their digestive tracts are damaged at birth, they may have to get both food and fluid through IV lines that also can pose risk of infection.
When the baby's internal organs are exposed to amniotic fluid, they become irritated. They may fail to grow to normal size. The baby's bowel may become permanently short, leading a lifetime of short bowel syndrome, in which food and medications have to be modified to easily absorbed forms. Many children treated with modern methods in hospitals that have experience dealing with the condition, however, go on to lead normal lives.
Why Doctors Are Sounding Alarms About Gastroschisis
Nearly every obstetrician eventually sees a case of gastroschisis, and large teaching hospitals with neonatal intensive care units deal with the problem on a regular basis. Since 1990, however, the frequency of gastroschisis in the United States has been increasing about 5 percent per year, especially in Texas, and especially among African-American women.