OEIS Syndrome is a rare (1 in 400,000 live births) and complicated condition that affects the lower abdominal wall structures of infants. In infants born with this condition, the development of the lower abdominal wall is interrupted in utero leaving many of the inner-abdominal structures, such as the bladder, intestines and reproductive organs, exposed.
Needless to say, a diagnosis of OEIS is rather shocking and confusing for many families to hear – and that was no different for the family of Sophie Webb.
“At the 20 week ultrasound we knew something was off, so our obstetrician sent us to the St. Louis Fetal Care Institute at SSM Health Cardinal Glennon Children’s Hospital,” explained Sophie’s mother, Sarah Webb.
As was the case with Sophie, OEIS is typically diagnosed before birth by a fetal ultrasound and confirmed at the time of birth.
“In the days leading up to and following Sophie’s birth, the team at SSM Health Cardinal Glennon walked us through everything and answered every question we had. If we didn’t understand something they, explained until we did,” said Sarah. “They gave us everyone’s cards with their names and numbers on them and told us to call anytime.”
Sophie is now 4-years old and she looks and acts just like any other girl of her age. She loves to entertain, pretend and play with her Barbie dolls. She also enjoys playing outside and she just recently learned how to ride a bike.
“There’s no better feeling than when she tells you how much she loves you and just wraps her arms around your neck to hug you,” said Sarah.
Despite her loving demeanor and cheery personality, Sophie’s early childhood has involved more than its share of challenges. With 12 surgeries thus far, she’s been a regular visitor to Cardinal Glennon Children’s Hospital. Her last round of procedures included hernia repair, muscle closure and bladder surgery.
“We spent three months at the hospital last year and everyone goes out of their way to help you and make you feel as comfortable as you can,” explained Sarah. “Sophie fell in love with her nurses on the second and third floor. We still keep in contact with them.”
As for Sophie’s journey thus far and what the future holds, Sarah takes a realistic view, sprinkled with tons optimism.
“You take one day at a time. You will have good days and bad, so you do everything you can to make the good ones count,” said Sarah. “Right now we just love spending time together as a family, watching Sophie grow and just letting her be a kid.”
Needless to say, a diagnosis of OEIS is rather shocking and confusing for many families to hear – and that was no different for the family of Sophie Webb.
“At the 20 week ultrasound we knew something was off, so our obstetrician sent us to the St. Louis Fetal Care Institute at SSM Health Cardinal Glennon Children’s Hospital,” explained Sophie’s mother, Sarah Webb.
As was the case with Sophie, OEIS is typically diagnosed before birth by a fetal ultrasound and confirmed at the time of birth.
“In the days leading up to and following Sophie’s birth, the team at SSM Health Cardinal Glennon walked us through everything and answered every question we had. If we didn’t understand something they, explained until we did,” said Sarah. “They gave us everyone’s cards with their names and numbers on them and told us to call anytime.”
Sophie is now 4-years old and she looks and acts just like any other girl of her age. She loves to entertain, pretend and play with her Barbie dolls. She also enjoys playing outside and she just recently learned how to ride a bike.
“There’s no better feeling than when she tells you how much she loves you and just wraps her arms around your neck to hug you,” said Sarah.
Despite her loving demeanor and cheery personality, Sophie’s early childhood has involved more than its share of challenges. With 12 surgeries thus far, she’s been a regular visitor to Cardinal Glennon Children’s Hospital. Her last round of procedures included hernia repair, muscle closure and bladder surgery.
“We spent three months at the hospital last year and everyone goes out of their way to help you and make you feel as comfortable as you can,” explained Sarah. “Sophie fell in love with her nurses on the second and third floor. We still keep in contact with them.”
As for Sophie’s journey thus far and what the future holds, Sarah takes a realistic view, sprinkled with tons optimism.
“You take one day at a time. You will have good days and bad, so you do everything you can to make the good ones count,” said Sarah. “Right now we just love spending time together as a family, watching Sophie grow and just letting her be a kid.”
