Racing up and down the soccer field, Makayla Bell is unstoppable. But before the spunky 8-year-old ever put on a pair of cleats, she had already proved that nothing could hold her back.
When Makayla’s mom, Melanie, was pregnant, she started experiencing an abnormal pain. An ultrasound with a local doctor showed baby Makayla had omphalocele, a birth defect in which the baby’s intestines and other organs form in a pouch outside the body because of a hole in the abdominal wall.
Melanie and her husband, Eric, were referred to a Des Moines hospital, where they discovered Makayla would also be born with a dilated right kidney, clubfoot, and spina bifida—a birth defect in which the spinal column doesn’t close completely while in the womb.
The Bells were told Makayla would likely be born with additional birth defects that couldn’t be seen on the ultrasound, but their doctors weren’t sure what those defects would be.
“Without a diagnosis, we didn’t know if Makayla was going to live, and we didn’t know what kind of life she would have if she did,” remembers Melanie.
Their local doctors consulted with University of Iowa Children’s Hospital specialists and decided it would be best if Makayla was born and cared for in Iowa City.
“It was a stressful time, but it definitely put me at ease to know that when she was going to come into this world, she was going to be in the right place in the right hands,” says Eric.
Makayla was born unexpectedly three weeks premature, but her UI Children’s Hospital doctors were then able to give the Bells a diagnosis: OEIS syndrome.
For more information and a video about Makayla, visit www.uichildrens.org/2015-Makayla.
OEIS stands for the four different birth defects present in those who have the syndrome: omphalocele; exstrophy of the bladder and bowel, where the bladder is in two halves outside of the body and the bowel is outside the body, as well, but not in the same external pouch as the other organs; an imperforated anus; and spinal bifida.
OEIS syndrome is very rare and must be treated on a case-by-case basis.
“There is no textbook example to follow,” says Melanie. “From one child to the next it can range in the severity of each birth defect.”
Makayla’s treatment required a team of 14 different UI Children’s Hospital specialists, and she has undergone 14 major surgeries since she was 5 days old.
From the education and training the Bells received from their nurses, to the compassion shown from her doctors, Melanie and Eric agree that Makayla’s team feels like family.
“They would talk to Makayla, even when she was too little to talk back,” says Melanie. “That’s what earned my trust.”
Makayla has come a long way over the years. Through it all, she’s kept a smile on her face and her older sister Ashlyn’s hand in hers.
“It was hard to be pregnant and carrying a baby that you didn’t know if you were ever going to deliver and take home,” says Melanie. “But to look at her today is just amazing.”