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When Jackie Reynolds and her husband Kelly made their way to the hospital for the arrival of their firstborn, they knew that shortly after delivery their baby would be whisked away to have emergency surgery. Soon after, there would be weeks in the Neonatal Intensive Care Unit at the University of Michigan in Ann Arbor.
Sawyer, their first son, was born with a rare, but life-threatening birth defect: Gastroschisis. The condition affects the abdominal wall, and causes the baby's intestines to dangle outside of the body, through a small hole beside the belly button.
"Honestly, it was the hardest thing we've ever had to go through," Jackie said. "We had no idea whether or not our baby would survive."
By the time Jackie was 16 weeks pregnant, doctors had discovered the condition in utero and prepared the first-time parents for what was to come: their baby would surely be born with organs outside of his body, and surgery may not happen for at least three weeks after delivery. In Sawyer's case, doctors preformed surgery immediately after he was born, and within the hour he was recovering in the N-ICU.
The birth defect is more commonly seen in teen mothers, especially those babies born to non-Hispanic black mothers under the age of 20. Reynolds, a white female in her late 20s with no history of smoking or alcohol consumption, did not fit the bill.
A handful of similar tales have recently been published by the Centers for Disease Control and Prevention as part of a story series highlighting the concerning rise of the condition in the United States.
The CDC estimates the number of gastroschisis cases has spiked, citing a 263 percent increase in cases between 1995 and 2012. In fact, between 1995 and 2005 alone, researchers say prevalence nearly doubled, according to a news release accompanying the story series. Overall, about 2,000 U.S. babies are born with the birth defect each year. What's more, the number of babies born with gastroschisis increased among mothers of every age and racial/ethnic group studied.
Researchers are puzzled.
It concerns us that we don t know why more babies are being born with this serious birth defect, said Coleen Boyle, Ph.D., director of CDC s National Center on Birth Defects and Developmental Disabilities.
Public health research is urgently needed to figure out the cause and why certain women are at higher risk of having a baby born with gastroschisis.
Though the condition can be life-threatening, most who are born with it often grow up to lead relatively healthy lives. In some cases, children may also have digestive and nutritional issues. In rare cases, the condition is fatal.
Sawyer, now 3 1/2 years old, leads an active, healthy life with no residual effects.
"We are definitely very lucky," Jackie said. "There were babies in the N-ICU that had been there for months. The doctors, who perform roughly 15 of these surgeries per year, told us Sawyer was their best case scenario."
In their report, CDC officials outlined several methods in addressing birth defects, including tracking birth defects through several state tracking systems, and funding large studies like the National Birth Defects Prevention Study (births 1997-2011) and the Birth Defects Study to Evaluate Pregnancy exposures which began with births in 2014. The studies could identify factors that may increase the risk for gastroschisis.
