Besides eating and sleeping, Bella Mia Craig has a daily goal of all six-month old babies – she wants to roll over. She hasn't quite made it on her own just yet, but mom does put Bella on her tummy every now and then for that new and different view of the world.
|PATIENT STORY: BELLA MIA CRAIG
Just a few months ago, that was a pretty scary thought for Bella's parents, Melissa and Adam Craig of Lockport.
Bella was born in February with a giant omphalocele, a 1-in-10,000 condition in which the body's abdominal organs are outside of the body-intestines, liver, spleen and stomach in Bella's case. The organs were in a sac, surrounded by a thin membrane.
The omphalocele was discovered during a routine ultrasound at 20 weeks. Melissa found out in a phone call from her doctor.
"I knew something was wrong because why would they call," she said.
She and her husband, Adam, did research.
"Pretty much it was all bad."
The mortality rate for giant omphaloceles is up to 80 percent, according to Dr. Don Liu, Bella's pediatric surgeon, chief of pediatric surgery at the University of Chicago and a member of the group that provides pediatric surgery services to Edward Hospital.
Following Bella's birth (6 lbs. 15 oz.), nurses in Edward's neonatal intensive care unit (NICU) began applying silvadine, an antibiotic cream, to the sac around the organs.
It's an approach that's called "paint and wait." Repeated applications of the silvadine harden into a protective shell. At the same time, the baby's abdominal cavity is growing. An elastic bandage wrapped around the baby puts slight pressure on the omphalocele, pushing it down into the growing opening.
Within a matter of weeks, Bella's parents had taken over "painting" duties, which continued when she was taken home about two months after being born. The "paint and wait" has been so successful that Bella is off all physical restrictions.
"She looks phenomenal," according to Kim Carmignani, BSN, RNC with Edward's NICU and Bella's case manager.
Bella's skin has almost grown over the omphalocele. Surgery will likely take place in the next couple of months to close the opening and reconstruct her abdominal wall.
In the meantime, everything else about Bella's development is exactly what would be expected of a baby her age.
"We feel relieved and super excited about her," says Melissa. "She's doing really well and she's a very happy baby."