Aulana Hulbert’s insides were compacted because of something she was born without, but a special surgery is giving her stomach some much needed space.
Aulana has to walk on her hands to get around. She can’t use her legs.
“She has no spine from the rib cage to the top of her pelvis, and because of this, her abdominal contents are squeezed,” said Dr. David W. Polly Jr., professor and chief of spine surgery at the University of Minnesota and chief of spine surgery at Twin Cities Shriners Hospital for Children.
It makes it hard for Aulana to eat and control her bladder and bowels, but a rare surgery could help.
“I won’t be squishing my guts anymore,” Aulana said.
“Previously, the described treatment of his had been to amputate the legs and then to use the leg bones to create a spine," Polly said.
Polly, however, is not taking Aulana’s legs.
"We figured out a way to build a spine for this child," Polly said.
Donor bone helps connect the spine to the pelvis. Then, one of Aulana’s ribs becomes a part of the new spine.
"We cut a segment of the rib, leaving the blood vessels attached, and swing the rib down to give blood supply to the bone to give it a chance to heal. They will all grow together and become her bone over time," Polly said.
Now, she has about six more inches of spine.
Aulana still walks on her hands, but the extra bone is making things better for her belly and her ability to sit up without using her hands.
"Also, she’s finding it a little easier to eat now and she has a little better bowel and bladder control," Polly explained.
Besides Aulana, only one other person in the world has had this procedure. Polly performed both operations. He said Aulana will likely have her spine lengthened one or two more times to give her internal organs the room they need as she grows.
While her condition is rare, Polly said it’s related to maternal diabetes. As diabetes rates increase, he said he wouldn’t be surprised if the abnormality becomes more common.