Having a baby is a joyous time that is accompanied by fear of the unknown. Many choose to use an ultrasound to unveil the sex of their baby before birth, aiding in the preparation process. For Jordan Bennett, an ultrasound unveiled more than whether her baby was going to be a boy or a girl.
“We went to the doctor to have an ultrasound and were excited to find out what the sex of our baby was going to be,” said Bennett. “They couldn’t tell if it was a boy or a girl. But what they did see was that our child had Gastroschisis.”
Gastroschisis is a birth defect in which the baby’s intestines, and sometimes other organs, are developed on the outside of the abdomen. It occurs when the muscles surrounding the abdominal wall do not develop correctly and a hole forms, allowing the intestines and other organs to extend outside the body.
“At that time, there weren’t a lot of resources on Gastroschisis and I couldn’t find anyone who had children born with the same issues. I felt very alone and scared,” Bennett said. “It wasn’t until we met Dr. (Bonnie) Beaver at Cabell Huntington Hospital that we felt as though everything was going to be OK.”
Bennett’s daughter, Taylor, was born five weeks early and spent 23 days in Cabell Huntington Hospital’s Neonatal Intensive Care Unit (NICU). At only five hours old, Taylor was taken in for surgery.
“Dr. Beaver was absolutely wonderful. She stayed by my side through all of my initial hospital stays before Taylor was born and continued to do so. She brought Taylor in for me to see her before she took her into surgery. She took the time to explain everything to me and was very optimistic,” Bennett shared.
Bennett said Dr. Beaver helped her have a better understanding of her daughter’s situation and provided her with outlets for research on her own once Taylor was released from the hospital.
“During research, I came across a group called Avery’s Angels. There, I not only found others who were going through what I was going through, but I also found a great resource for me to reach out to others going through the same thing who were in the area,” she said.
Bennett began a local chapter of Avery’s Angels in which she continues to serve as the leader.
“It is a great resource to reach out to mothers who are dealing with the same fears that I went through. We put together care packages and are connected by local physicians who share our organization with their patients who then reach out to us. And, the national chapter honors those physicians who go above and beyond in dealing with Gastroschisis,” she said.
Dr. Beaver was presented with the Award of Excellence by the Avery’s Angels Gastroschisis Foundation in November. And in March, Bennett completed a declaration with the state to request that July 30 be named Gastroschisis Awareness Day.
“I filled out a formal declaration and explained the disease in detail and in about two months we were notified by Governor (Earl Ray) Tomblin that West Virginia would join others across the nation in recognizing July 30th as Gastroschisis Awareness Day,” Bennett said. “We are currently planning awareness day events to help share our availability to others in the area. I don’t ever want a mother to feel the fear that I once had when Taylor was diagnosed. I want to be a resource for others to know there is hope.”
For more information about Avery’s Angels Gastroschisis Foundation, visit them on the web at averysangels.org.
Cabell Huntington Hospital is a 303-bed academic medical center located in Huntington, West Virginia. Cabell Huntington is home to the Hoops Family Children’s Hospital and the Edwards Comprehensive Cancer Center and cares for patients from more than 29 counties throughout West Virginia, eastern Kentucky and southern Ohio. Opened in 1956, it is affiliated with Marshall University Schools of Medicine, Pharmacy and Nursing.
