Twin sisters Jenessa and Genesis were delivered Dec. 19, but it wasn’t until June that parents Theodora and Epimenio were able to bring them home together for the first time, donning coordinating onesies and headbands.
Just months earlier, the family faced uncertainties about the girls’ chances for survival. When Theodora was three months pregnant, an obstetrician noticed a mass on Jenessa’s neck during an ultrasound.
It turned out to be a teratoma tumor, which is not cancerous but is fast growing and could potentially press on the baby’s airway, making it difficult —and potentially impossible — for her to breathe once she was born. The complication could have also affected Jenessa’s twin sister’s health since the two shared a placenta.
“It was a scary time, but we were going to go forward and do whatever we had to do to bring my girls into the world,” Theodora said.
Fetal medicine expertise in their backyard
A Chicago hospital referred the family to The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital of Chicago. Dr. Aimen Shaaban, director of The Chicago Institute for Fetal Health, is a nationally recognized expert in surgical fetal intervention.
“I didn’t know this type of surgery was even possible,” said Theodora, who lives in a neighborhood south of downtown Chicago. “When I finally met with Dr. Shaaban and the team, I felt comfortable because they had a plan. Before I came here I wondered what would happen with my girls, but the fetal institute team had their plan, figured out what to do and they made it happen.”
Dr. Shaaban and the fetal health team, including specialists from pediatric surgery, pediatric otolaryngology, maternal-fetal medicine, neonatology, pediatric cardiology, fetal anesthesia and obstetrical anesthesia worked carefully to develop a care strategy for Theodora to ensure they were balancing the best options her health with the health of both babies. Ultimately, Dr. Shaaban was able to perform what’s known as an EXIT, or ex utero intrapartum treatment, procedure when Theodora started showing signs of labor at 29 weeks pregnant.
During surgery, he made an incision on Theodora’s uterus to access Jenessa. The surgical team stabilized Jenessa’s airway and delivered her to remove the tumor, which had grown to almost the size of her head. Meanwhile, the team monitored Theodora under general anesthesia and the other twin, Genesis, who remained in utero. Genesis was monitored continuously during the procedure and was stable throughout. She was delivered immediately after the birth of her twin sister, both about 10 weeks premature.
Achieving the ‘greatest success we could hope for’
Both babies survived. Genesis, the twin without the tumor, progressed quickly and was able to go home after three months in Lurie Children’s Neonatal Intensive Care Unit, or NICU. Jenessa had to remain in the hospital. She faced complications that required a tracheostomy tube and a gastrostomy tube to help her breathe and eat, but she is expected to eventually need neither as she gets older and stronger, Dr. Shaaban said.
Jenessa may face other issues later on because of her premature birth and underdeveloped lungs. Teratoma tumors like the one she had can return, but the chance is small, because Dr. Shaaban was able to remove it completely.
The outcome is the “greatest success we could hope for,” Dr. Shaaban said. “I’m so happy for her. She told us the most important thing is that she takes home the babies that God gave her. And she has.”
The family is looking forward to being home together with their baby girls and their two older sons, who will meet Jenessa for the first time.
“We’ve been waiting for this day,” Theodora said.