Then and now: Checking in with The Chicago Institute for Fetal Health patients

Check in with three families featured previously on the Lurie Children's blog following their care with The Chicago Institute for Fetal Health:

EXIT procedure: Jenessa and Genesis, now 3, bond and go to school

Identical twin sisters Jenessa and Genesis entered the world in December 2018, about 11 weeks before their due date, following a remarkable procedure to remove a massive teratoma tumor on Jenessa’s neck.

The tumor, while not cancerous, was fast growing and without intervention would have made it nearly impossible for Jenessa to breathe following birth. It also threatened mom Theodora’s health, and the health of her twin sister, since they shared a placenta.

Theodora and the girls underwent what’s known as an EXIT, or ex utero intrapartum treatment, procedure when Theodora started showing signs of labor at 29 weeks pregnant. With a team of specialists from pediatric surgery, pediatric otolaryngology, maternal-fetal medicine, neonatology, pediatric cardiology, fetal anesthesia and obstetrical anesthesia, director of The Chicago Institute for Fetal Health Dr. Aimen Shaaban was able to remove the tumor after otolaryngologist Dr. Jonathan Ida stabilized her airway so she could be delivered. Then, her sister Genesis was delivered. Both spent months in the Neonatal Intensive Care Unit (NICU) before going home.

Today, the girls are three years old and just finished a year of preschool. Last fall, Jenessa had her tracheostomy tube, which helped her breathe, removed for good, following an airway reconstruction surgery with Dr. Ida. Both girls face some speech delays, but are otherwise meeting their milestones on time, Theodora said.

The girls, initially separated at birth since they needed different care, have since had time to fully bond.

“They still have their moments where they want to argue, but they get happy easily and make themselves laugh,” Theodora said.

The family follows up with Dr. Ida every six months and Dr. Shaaban annually to monitor Jenessa’s progress.

“I look back now and it’s like, oh my gosh, I didn’t fully grasp how risky everything was that we went through, I was just thinking about what was best for the babies,” Theodora says. “I trust Dr. Shaaban and The CIFH team so much. They knew exactly what the girls needed – to the point where they can thrive.”

Read the girls' earlier story here.

Life ‘without limitations’ for Ben, CPAM survivor, now 3

In 2019, At 34 weeks pregnant, Jackie underwent what’s known as an EXIT-to-resection procedure, so that her son, Ben, could have a rare but potentially fatal mass known as congenital pulmonary airway malformation (CPAM) on his lung removed before being born. Without intervention, Ben could have suffocated once the umbilical cord was cut.

With Jackie under general anesthesia, Ben was partially delivered through an incision on her abdomen. Fetal surgeons, led by The Chicago Institute for Fetal Health director Dr. Aimen Shaaban, operated on Ben after he was partially delivered to carefully remove the mass from his chest and allow the normal lung to expand. After that, Ben was fully delivered and stabilized on a ventilator. The rare and complex procedure took about three hours and involved 32 health care providers. After almost two months recovering in the Neonatal Intensive Care Unit (NICU), Ben was able to go home.

Today, Ben is three-and-a-half years old and “doing amazing,” Jackie said.

“Ben is the life of the party. We always say that he loves anything with a steering wheel. Trucks, cars, motorcycles, boats, airplanes, truly anything that “goes,’” Jackie said. Ben has also become a proud big brother to Jonathan, who was born in November, feeding him bottles and pushing his stroller.

“We are enjoying our family of four and really living life to the fullest with two healthy young boys,” Jackie said.

 While Ben has graduated from The CIFH, he follows up occasionally with Lurie Children’s pulmonary department, and does occupational therapy. Jackie said she and husband Dan say it feels “unreal” to look back and see how far he has come.

“When he was born, we didn’t know what his future held,” Jackie said. “Looking at him now, you would never know he entered the world in such a traumatic way. We are forever grateful to the Chicago institute for giving him this chance at a life without limitations.”

Read Ben's earlier story here.

BPS survivor, Leonie, chatty and social at four-and-a-half

Looking back almost five years ago, Libby recalls how quickly she can go back emotionally to the moments she and her husband, Christian, learned something was wrong in their pregnancy. 

In 2017, at 28 weeks pregnant, Libby had an ultrasound that revealed a mass in her baby’s chest. It was causing an alarming amount of fluid to build up in the baby’s chest and abdomen, and in Libby’s uterus.

Following a fetal MRI at The Chicago Institute for Fetal Health, Dr. Aimen Shaaban and the fetal care team diagnosed baby Leonie with bronchopulmonary sequestration, also known as BPS, with non-immune hydrops. As Leonie continued to grow, she started to make progress on her own, but prior to her delivery, Libby had a fetal thoracentesis performed to drain the remaining fluid in her chest.

Leonie came into this world at 37 weeks and when she turned 4 months old, Dr. Shaaban removed the mass from her lungs, leaving her with no long-term complications, other than a scar. Leonie graduated from The CIFH at just six months old with specific instructions from Dr. Shaaban to “just live life.”

Today, Leonie is four-and-a-half years old and is busy living life! “She is a loquacious, social, and bright girl who loves to dance, “read” stories, and imagine adventures with her stuffed animals,” Libby said. “She’s entering pre-K in the fall at a local school in Minneapolis, where she loves riding the bus to school and playing with her ‘best friends’.”

Every year on April 26, Libby, Christian and Leonie make a carrot cake together to celebrate Leonie’s successful surgery. To Libby and Christian, it’s important that she knows her story without overwhelming her with details, so for now, they toast to Dr. Shaaban, science and family and celebrate their healthy girl. 

“As a parent, you want to know you’re doing your best for your child, so knowing you’re in good hands is reassuring on multiple levels. Our team at CIFH are our heroes!”

Read Leonie's earlier story here.