4 minute read
EXIT Procedure Saves Baby with Rare Tumor Diagnosis
by Connexions
Giving birth under normal circumstances can often be incredibly stressful. Giving birth to a baby with an unusual prenatal diagnosis at 27 weeks in the midst of a global pandemic, though, comes with its own unique challenges. That was the reality one family was facing. But the care team at the Colorado Fetal Care Center — the only team in the region able to perform the procedure their baby needed to survive — was there to help them through it.
Fetal tumor diagnosis and treatment plan
When rural Colorado couple Lyndsy Tobler and her husband, Aaron, found out they were pregnant with their third child, Ella, they were excited. Lyndsy’s other pregnancies had gone smoothly, and this one was too. At Lyndsy’s 20-week ultrasound, doctors found a large mass on Ella’s tailbone.
Using telehealth, doctors connected with maternal-fetal medicine specialist and Medical Director of the Colorado Fetal Care Center, Michael Zaretsky, MD, who confirmed Ella had a particularly aggressive sacrococcygeal teratoma. Also known as SCT, it’s an extremely rare fetal tumor that occurs in approximately 1 in every 40,000 live births.
“I automatically started researching the diagnosis,” Lyndsy says, “but because the condition is so rare, there was hardly any information on it. It was extremely frustrating.”
At 22 weeks, Lyndsy and Aaron traveled to Denver for a comprehensive appointment at the Colorado Fetal Care Center. After several in-depth fetal diagnostic tests, including a fetal MRI, ultrasound and echocardiogram, they were finally able to get concrete answers and treatment options. Dr. Zaretsky and the care team explained the associated risks and outcomes possibilities of each. Importantly, some treatment options would increase the risk for early delivery, which meant Ella would have a higher risk of complications, even death.
“I had tons of questions over the next few weeks,” Lyndsy says. “But every time I’d call Dr. Zaretsky or any of the Colorado Fetal Care Center doctors, they’d call me back that same day. That really helped me and my husband through the process so we could make a decision that was right for us.”
Lyndsy and Aaron decided to let doctors continue monitoring Ella to see if she could make it to 28 weeks. That way, she could grow as much as possible before doctors had to intervene.
By 27 weeks, Lyndsy was so swollen with amniotic fluid and the size of Ella’s tumor was so large that Lyndsy’s doctors decided to schedule her for an ex utero intrapartum treatment procedure, or EXIT procedure.
The Colorado Fetal Care Center is the only hospital in the Intermountain Region to offer an EXIT procedure. This is because it’s a complex procedure, requiring a coordinated effort from both maternal and pediatric providers from multiple specialties including maternal anesthesia, fetal anesthesia, maternal fetal medicine, fetal surgery and fetal cardiology. The procedure also has a strict timetable and requires constant monitoring of the baby’s heart, blood flow and many other vitals.
Fetal and pediatric surgeon Kenneth Liechty, MD, performed Ella’s EXIT procedure with an extensive multidisciplinary team of over 20 specialists to ensure that Ella and Lyndsy received the best possible care. Doctors delivered only Ella’s backside at first, so they could remove her SCT while she was still connected to the umbilical cord. Doing this would give Ella the best chance for survival. The SCT was about double Ella’s size, the largest one the team at Colorado Fetal Care Center had seen. Once it was successfully removed, they fully delivered Ella.
But Ella remained in critical condition. She needed resuscitation from neonatology specialists. Her heart wasn’t emptying blood. Her lungs weren’t filling with air. At one point, it was unlikely she would live, but the team continued to fight. Against all odds, Ella stabilized. Eventually, she was moved down the hall to recover in the Level IV Neonatal Intensive Care Unit (NICU) just steps away from where Lyndsy was recovering in the Labor and Delivery Unit . “They were really good about updating us,” Lyndsy recalls. “They pushed me over in my hospital bed so that I got to see Ella in her private room. At first the updates were, ‘Your baby is very sick, and she isn’t doing well.’ But then over time that changed to, ‘She’s moving and doing well and looking good.’ And I think that really says something about the quality of care she was getting.”
Although Ella was in the NICU for several more months, she is now a normal premature baby. She’s healthy, sleeping a lot and gaining weight. She’ll have another surgery to remove her coccyx, which should lower her chances of another tumor. Looking back, Lyndsy says she’s incredibly grateful for everyone at the Colorado Fetal Care Center and the comprehensive assistance they provided.
“All of our primary nurses and everyone on our care team was amazing, and they helped us so much throughout our entire stay,” Lyndsy says. “It really made me feel cared for and made the experience much more comfortable.”
