Photo: OHSU
It began as a typical day for Vanessa Garcia-Pelayo and her husband, Jonathan Rodriguez-Tapia, who excitedly arrived at their five-month prenatal anatomy scan.
But the appointment, a routine prenatal ultrasound that examines a fetus’ overall health and development, took a turn. After noticing their provider was taking extra time to look over the ultrasound, Garcia-Pelayo recalls a growing sense of worry.
The doctor told them their baby had spina bifida, a birth defect that occurs when the spine doesn’t close properly during the first month of pregnancy. After reviewing next steps with their care team — including the need to travel out of state to receive surgery — Garcia-Pelayo and Rodriguez-Tapia left feeling shocked and overwhelmed.
“We had no idea what spina bifida was, so my mind went to the worst place, and I was worried my child would never be able to live independently,” Garcia-Pelayo said. “I just prayed for a solution, and I thought that if something was meant for us, then it would come to us.”
The next day, she received a call from Andrew Chon, M.D., a surgeon with the Fetal Care Program at OHSU Doernbecher Children’s Hospital.
Chon explained that historically, the standard of care for spina bifida was closure of the spine during the first few days of an infant’s life. This approach is often accompanied by chronic, lifelong medical problems for the child, including hydrocephalus, a buildup of spinal fluid, and mobility and motor function issues.
However, advances in fetal surgery over the past decade have made it possible to repair spina bifida in-utero — or inside the uterus — during pregnancy. While fetal surgery is not a cure for spina bifida, operating on the baby in the womb can lead to significantly better long-term health outcomes than traditional repair after birth.
In previous years, such complex surgery would have required Oregon patients to travel out of state — saddling worried parents with travel logistics and costs, time off work, and time away from their support systems. But with the recent addition of surgeons Chon and Raphael Sun, M.D., OHSU Doernbecher’s Fetal Care Program now can provide in-utero treatments for nearly a dozen complex conditions that occur during pregnancy, including spina bifida. OHSU is one of only a handful of programs nationally to provide medical and surgical interventions for high-risk pregnancies and newborns all under one roof.
Garcia-Pelayo’s surgery was the first fetoscopic procedure for spina bifida performed in the Pacific Northwest and north of Los Angeles. Fetoscopic procedures are a minimally invasive surgical method that involve a fetoscope, or tiny camera at the end of a long tube, being inserted through the abdomen and into the uterus. The procedure at OHSU required collaboration among several maternal-fetal medicine and pediatric specialties, and the multidisciplinary care team spent hundreds of hours preparing to ensure it went smoothly.
“The surgery was a culmination of a years-long journey and speaks to the incredible teamwork it took to get to this moment,” Chon said. “It was deeply gratifying and an incredible privilege to have cared for this patient, who so courageously entrusted us with her and her baby’s care.”
Garcia-Pelayo recalls that seeing the sheer number of people in the operating room the morning of surgery made the reality of the procedure finally sink in: “There were so many people there — they kept coming in, one after the other. That’s when it really hit me that I was doing this. But I felt calm and had so much faith that everything would turn out well.”
During the procedure, there were upward of 20 specialists in the operating room, including fetal surgeons Chon and Sun; pediatric neurosurgeons Jesse Winer, M.D., and Tina Sayama M.D.; perinatologists Leonardo Pereira, M.D., and Amy Hermesch, M.D.; neonatologist Amanda Kim M.D.; as well as three anesthesiologists, an ultrasound sonographer, five nurses and countless others who were involved in critical pre-surgery preparation and post-surgery recovery.
Also present were several mentors from the Fetal Center at Texas Children’s Hospital, including Michael Belfort, M.D., a pioneer in the field of non-invasive fetoscopic surgery.
“It is really important for OHSU to be able to perform this procedure not only so we can improve the lives of children born with this condition, but also to ensure patients don’t have to travel for care during pregnancy — especially when they’re already facing the stress of an unexpected medical diagnosis,” Winer said. “I have an incredible amount of pride in this team and our ability to take on this challenge, and it was our collaboration and preparation that made this such a success.
“I think this also highlights Vanessa’s strength and bravery as an individual and as a mom to be able to make this choice for her child,” he added.
Garcia-Pelayo said each care team member played a unique and important role in her experience.
“I went through many ups and downs before and after surgery, but I felt so supported and loved during the whole process,” Garcia-Pelayo said. “My nurse, Elyse, was constantly checking in on me and Dr. Chon even gave me his personal cell phone number so I could contact him anytime something was wrong.”
Though her pregnancy brought many obstacles, everything fell into place a few months after surgery, when, at 36 weeks pregnant, Garcia-Pelayo gave birth to a beautiful baby boy named Lorenzo.
Lorenzo will continue to receive care from OHSU Doernbecher's Spina Bifida Program, Oregon's only comprehensive ongoing care for infants, children and teens with the condition. While multidisciplinary care and follow-up will be needed throughout his childhood, the care team is confident that his symptoms and complications will be far less severe than if the surgery had been performed after birth. Ultimately, it will significantly improve his quality of life.
Chon and Sun are hopeful that the success of this case will foster continued innovation for in-utero procedures at OHSU Doernbecher.
“This is going to be the new standard for patients,” Sun said. “The collaborative culture we’ve created and being able to unite so many specialties in one operating room will allow us to continue developing and advancing our techniques not only for this procedure, but other fetal conditions that we see.”
Source: OHSU