This year, OHSU’s fetal surgery team performed the first in-utero repair of spina bifida in the region. This could significantly improve long-term health outcomes for babies born with spina bifida. (OHSU/Kristin Torres Hicks)
It started out as a typical day for Vanessa Garcia-Pelayo and her husband, Jonathan Rodriguez-Tapia, excitedly arriving for their 5-month-old prenatal anatomy scan.
But her appointment for a routine prenatal ultrasound, which checks the fetus’s overall health and development, took a turn for the worse. García-Pelayo recalls growing anxious when she noticed that health care providers were spending extra time on ultrasounds.
Doctors told her the baby had spina bifida. This is a birth defect that occurs when the vertebrae do not close properly during the first month of pregnancy. After discussing next steps with their care team, including the need to travel out of state for surgery, Garcia Pelayo and Rodriguez Tapia returned home feeling shocked and devastated.
“We had no idea what spina bifida was, so my mind went to the worst place and I was worried that my child would never be able to live independently,” Garcia Pelayo said. said. “I was just praying for a solution, and I thought if something was meant for us, it would come to us.”
Dr. Andrew Chong (OHSU)
The next day, she received a call from Dr. Andrew Chong, a surgeon in the Fetal Care Program at OHSU Doernbecher Children’s Hospital.
Chon explained that historically, the standard treatment for spina bifida was to close the spine in the first few days of an infant’s life. This approach is often accompanied by chronic, lifelong medical problems in children, such as hydrocephalus, cerebrospinal fluid accumulation, and mobility and motor function problems.
However, advances in fetal surgery over the past decade have made it possible to repair spina bifida in utero, that is, during pregnancy. Fetal surgery is not a cure for spina bifida, but operating on the baby in the womb can significantly improve long-term health outcomes than traditional repair after birth.
Dr. Rafael Sun (OHSU)
In the past, such a complex surgery would have required Oregon patients to travel out of state, leaving anxious parents with travel arrangements and costs, time off from work, and time away from their support systems. This would have forced them to bear such burdens. But with the recent addition of surgeons Dr. Chong and Dr. Rafael Sun, OHSU Dornbecher’s Fetal Care Program can now offer in utero treatments for more than a dozen complex conditions that occur during pregnancy, including spina bifida. Now it looks like this. OHSU is one of the few programs nationwide that provides medical and surgical interventions for high-risk pregnancies and newborns, all under one roof.
innovative interventions
Garcia Pelayo’s surgery was the first fetoscopy surgery for spina bifida performed in the Pacific Northwest and north of Los Angeles. Fetoscopic surgery is a minimally invasive surgical method in which a fetoscope, or small camera at the end of a long tube, is inserted through the abdomen and into the uterus. The procedure at OHSU required the collaboration of multiple maternal-fetal medicine and pediatric specialties, and the multidisciplinary care team spent hundreds of hours preparing to ensure the surgery went smoothly.
“This surgery is the culmination of a multi-year journey and speaks to the incredible teamwork it took to get to this moment,” Chong said. “It was such a pleasure and an incredible honor to care for this patient who had the courage to entrust us with the care of her and her baby.”
This year, OHSU’s fetal surgery team performed the first in-utero repair of spina bifida in the region. This could significantly improve long-term health outcomes for babies born with spina bifida. (male)
García Pelayo recalls that the reality of the surgery finally dawned on her the morning of the surgery, when she saw the huge number of people in the operating room. That’s when I really realized I was doing this. But I remained calm and strongly believed that everything would be fine. ”
During the operation, there were more than 20 experts in the operating room, including fetal surgeons Chung and Sun. Pediatric neurosurgeons Dr. Jesse Weiner and Dr. Tina Sayama. Perinatologists Dr. Leonardo Pereira and Dr. Amy Helmesh. neonatologist Dr. Amanda Kim; Also included were three anesthesiologists, one sonographer, five nurses, and countless others who were involved in the critical pre-operative preparation and post-operative recovery.
Also in attendance were several leaders from the Texas Children’s Hospital Fetal Center, including Michael Belfort, MD, a pioneer in the field of non-invasive fetoscopy surgery.
“The ability of OHSU to perform this surgery not only improves the lives of children born with this disease, but also so that patients, especially those who are pregnant, do not have to travel for treatment. “It’s also very important for people who are already facing the stress of an unexpected medical diagnosis,” Weiner said. “I am incredibly proud of this team and our ability to take on this challenge. It was our collaboration and preparation that made this a success.
“I think this also highlights Vanessa’s strength and courage as an individual and as a mother to be able to make this choice for her child,” he added.
Garcia Pelayo said each member of her care team played a unique and important role in her experience.
“I went through many ups and downs before and after the surgery, but I felt so supported and loved throughout the entire process,” Garcia-Pelayo said. “Nurse Elise constantly checked on me, and Dr. Chong also gave me his personal cell phone number so I could call her if I had any problems.”
welcome lorenzo
Her pregnancy came with many obstacles, but a few months after the surgery, at 36 weeks pregnant, everything fell into place as Garcia Pelayo gave birth to a beautiful baby boy named Lorenzo.
Lorenzo will continue his treatment through the Spina Bifida Program at OHSU Doernbecher. This program is Oregon’s only comprehensive continuum of care for infants, children, and teens with this disease. Although he will require multidisciplinary care and monitoring throughout his childhood, his care team is confident that his symptoms and complications will be far less severe than if surgery were performed after birth. Ultimately, it will significantly improve his quality of life.
Chon and Sun hope the success of this lawsuit will spur continued innovation in intrauterine procedures at OHSU Doernbecher.
“This will be the new normal for patients,” Sun said. “The collaborative culture we have built and the ability to integrate so many specialties into one operating room makes us unique, not only for this procedure, but for other fetal conditions that we see. We can continue to develop and advance our technology.”
