Ashley’s Story: How One Little Girl Survived Some Serious Birth Defects

During her first trimester of pregnancy, Kayte Thomas went in for a routine ultrasound. Her heart sunk when “Let’s listen to the heartbeat,” turned to “Hmm… I’d like to take a closer look at that.” The doctors found that her unborn daughter, Ashley, had gastroschisis, a birth defect of the abdominal wall in which the baby’s intestines stick outside of the body, through a hole beside the belly button.

Ashley was born in 2005 with multiple birth defects. In addition to gastroschisis, she had microtia, which caused her to have permanent hearing impairment, and a submucous cleft palate, which caused speech impediments. Despite these incredible challenges, the doctors said Ashley’s chance of survival was good. After several surgeries, and occupational and speech therapies, Ashley is now a vivacious 9-year-old. She is an inquisitive 3^rd grader who enjoys reading and writing stories, playing piano, and running track. Ashley loves her friends, and wants to grow up to be a scientist.

At the time of her daughter’s diagnosis, Kayte’s doctors informed her that gastroschisis occurred in 1 in 10,000 live births in the United States each year. Today, gastroschisis appears to be occurring more frequently, now affecting 1 in 2,229 U.S. live births annually. As gastroschisis becomes more common, there is a need to increase awareness about the condition and a need for more research to determine what causes it and how it might be prevented. There is also a need to connect families who are affected by gastroschisis.

Avery’s Angels Gastroschisis Foundation, founded by Meghan Hall, promotes community support, education and awareness, and advocacy in support of research to learn more about the causes of gastroschisis and ways to prevent it. The Foundation has grown to 200 volunteers worldwide providing support to, and advocating for, families and patients. As a founding member of Avery’s Angels, Kayte has been able to advocate on behalf of countless families, to observe the wonder of medical interventions, and to witness a slow but steady increase in research to find the causes of this birth defect. She has created awareness campaigns and spoken passionately about the need for more research and better birth defects tracking programs to help identify and understand the causes of gastroschisis and all birth defects. A lot has changed in the decade since Ashley was born!

Ashley’s chances of survival would have been excellent regardless of where in the United States she had been born. However, children born in countries with fewer resources and competing priorities are less likely to get the health care they need to survive. Over the years, Kayte has befriended many doctors around the world who are champions for children with gastroschisis, and through them she has gotten .a glimpse of what it means to have difficulty accessing medical care or technology. Kayte learned from Gerardo in Mexico that babies born with gastroschisis can be saved by fashioning a silo out of Ziploc bags and twist ties. She learned from Dahlia in Malaysia that being near a major hospital is of vital importance, and that sepsis – an infection in the bloodstream – and a shortage of surgeons are often the biggest barriers to survival. Finally, Kayte learned from Obikili in Nigeria that when doctors are battling malaria and pneumonia, there is often little time for proper prenatal diagnosis or care – and babies born in Nigeria with gastroschisis rarely survive.

Kayte’s greatest hope is that World Birth Defects Day will mark the beginning of another decade of change by addressing the vast differences in survival rates of children with birth defects around the world.

Through World Birth Defects Day, we can work together on a global scale to ensure that birth defects research is funded and technology is shared, so that the diagnosis of a major birth defect can be a story of survival everywhere.