Baby Girl Joins Twin Sister at Home after Fetal Surgeon Removes Her Life-Threatening Tumor

September 17, 2019

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. A large amount of fluid was accumulating around Jenessa in utero, and this complication could have also affected Theodora’s health, and Jenessa’s identical 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

Dr. Xavier Pombar, a Maternal-Fetal Medicine specialist at Rush University Medical Center and a collaborative partner with The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital of Chicago, referred the family to The Chicago Institute. Dr. Aimen Shaaban, director of the institute, is a nationally recognized expert in surgical fetal intervention.

Fetal Baby.jpg — *Jenessa’s teratoma tumor affected her breathing because it grew from her neck and eventually became nearly the size of her head.*

“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 for her health with the health of both babies.

The plan culminated with Dr. Shaaban performing 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. Dr. Jonathan Ida, an otolaryngologist, then stabilized Jenessa’s airway so she could be delivered. Dr. Shaaban was then able to remove the tumor, which had grown to almost the size of Jenessa’s head.

Meanwhile, the team monitored Theodora, who was 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 sister, both 10 weeks premature.

Achieving the ‘greatest success we could hope for’

Fetal Family Together.jpg — Jenessa, in blue, with her family and members of The Chicago Institute for Fetal Health including Dr. Xavier Pombar, maternal-fetal medicine physician (left), Dr. Aimen Shaaban, fetal surgeon (center) and Dr. Meghan A. Coghlan, neonatologist (right).

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, which provides the highest level of care to the most critically ill newborns in the region. Jenessa had to remain in the hospital. She faced complications that required a tracheostomy tube and a gastrostomy tube, 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 Theodora. She told us the most important thing is that she takes home the babies that God gave her. And she has.”

After months apart, the family is now together at home.

“We’ve been waiting for this day,” Theodora said.

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