Babies Are Being Born With Organs Outside Their Bodies, And Scientists Don't Know Why

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.

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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.

Gastroschisis Is Not Anyone's Fault, But It May Be Possible To Prevent It

What could be causing this mini-epidemic of gastroschisis?

Gastroschisis is not something that runs in families. There is no single gene that dictates that a child will be born this way. The future siblings of a child who has the condition are not at greater risk for the disease.

There are some indications that some controllable factors influence the risk of gastroschisis.

• Women who use opioid medications early in pregnancy have about an 80 percent greater risk of having a child born with this birth defect, according to the National Birth Defects Prevention Study (NBDPS) in the United States, but that only means that the risk goes up from about 1 in 12,000 to about 1 in 6,000.

• Women who smoke or drink during pregnancy are slightly more likely to have babies who have this condition.
• Women who are on selective serotonin reuptake inhibitors (SSRIs) for depression at the beginning of pregnancy are about 2-1/2 times more likely to have babies that have the condition, but this only raises the risk from 1 in 12,000 to about 1 in 5,000. Prozac raises risk less than Paxil.
• Recreational drug use certainly cannot be recommended for mothers to be, but it does not seem to increase the risk of gastroschisis.
• Exposure to agricultural chemicals, especially among Mexican-American women in the southern San Joaquin Valley in California, increases the risk of gastroschisis.
• Use of chlorinated swimming pools during early pregnancy is associated with a 30 percent higher rate of gastroschisis among white women over the age of 20, although swimming in untreated water is not necessarily a good idea.

The fact is that the risk for gastroschisis is increased by things women might do before they know they are pregnant. A conscientious mother to be could still have a baby who has the disease. On the other hand, certain factors seem to reduce the risk of gastroschisis.

• Women who wait until after they are teenagers to get pregnant are less likely to bear a child who has the disease. 
• Women of African descent are still less likely to have a child who has the disease, although rates of gastroschisis among African-American women have been rising sharply.
• Diet can make a huge difference in the risk of gastroschisis.

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In fact, a study from the United Kingdom found that women who consumed fresh fruits and vegetables every day during their first trimester were from 60 to 96 percent less likely to have babies with the disease. Taking folic acid supplements every day during the first trimester resulted in a 30 to 70 percent reduction of the risk of the disease; it's better to take folic acid in the form of methylfolate, just in case you are in the 20 to 22 percent of the population that has a genetic variation called the methyltetrahydrofolate reductase mutation, which interferes with the body's use of the more common form of folic acid. Many women will be happy to know that increasing body fat is also associated with a lower risk of the disease, presumably because it guarantees the developing child will receive adequate calories.

There is just one caveat to these recommendations for avoiding this horrible birth defect. Don't smoke. In the UK study, eating right, maintaining weight, and taking supplements do not offset the detrimental effects of smoking. it can be hard to quit, but smoking cessation helps you and your baby avoid an even harder situation.