Meredith College social work student Kayte Thomas recently spoke at the 2010 International Gastroschisis Conference in Barcelona, Spain. Thomas is chief administrative officer of Avery’s Angels Gastroschisis Foundation, the only foundation of its kind.
Gastroschisis is a birth defect that causes the intestines and other organs to protrude from the abdomen at birth. Avery’s Angels was formed in 2009 after the founder, Meghan Hall, lost her son Avery to gastroschisis. Thomas, whose daughter Ashley was born with gastroschisis, has been involved in gastroschisis outreach for five years.
According to Thomas, the prognosis in more industrialized nations is very good, with a 90% survival rate, while in other countries the survival rate is below 50%.
“However, some children have long term issues from this disease including but not limited to multiple surgeries, intestinal blockages, and organ transplants,” Thomas said. “Even the healthiest of gastroschisis patients tend to have prolonged feeding issues and slow weight gain.”
Thomas spoke about the Avery’s Angels organization before an audience of 94 doctors representing 19 countries. Her presentation was a way to “share the family perspective with the physicians who attended the conference to remind them in a non-clinical way of what the families experience.”
Avery's Angels is an all-volunteer team dedicated to supporting families.
“Primarily, we run a parent-to-parent support network which involves the veteran gastroschisis parents, and sometimes older gastroschisis survivors, reaching out to new families so they know they are not alone,” Thomas said. “I told the doctors about how Avery's Angels began, the support we provide for families … the depression and fear that these families experience, and the ongoing issues that we encounter.”
Thomas was pleased with the response from the doctors in attendance.
“So many doctors came up to me afterwards and said that what we are doing is important, many asked about how they could start an Avery's Angels in their own country,” Thomas said. “They all expressed gratitude for the reminder of the things they may not see.”
Date Submitted: 2010-12-01
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