After facing two years of fertility challenges, Aja and Ray Ayo were surprised and thrilled to discover last spring that they were expecting a baby girl.
However, excitement turned into overwhelm when, at their 20-week anatomy scan, they discovered their baby had a congenital diaphragmatic hernia, or CDH, a rare birth defect that causes abnormal development of the diaphragm.
When the diaphragm doesn’t fully form during pregnancy, it creates an opening that allows the baby’s abdominal organs to move into the chest cavity and compress the heart and lungs. This compression stunts critical lung growth and causes life-threatening breathing problems and high blood pressure upon birth.
While there is a range of CDH diagnoses, from mild to severe, all newborns affected by CDH will require immediate intensive care at delivery.
“We were stunned — we’d never even heard about this condition,” Aja recalls. “We spent that weekend doing a lot of research but didn’t know how severe it was or what to expect.”
After an amniocentesis and MRI revealed that their baby’s case was severe, the Ayos were transferred to Oregon Health & Science University to see fetal care specialists Andrew Chon, M.D.,associate professor of cbstetrics and gynecology, OHSU School of Medicine, and Raphael Sun, M.D., associate professor of pediatric surgery, OHSU School of Medicine, who determined that right after birth, the baby would require a surgery to repair the diaphragm and contain the organs in the abdomen.
OHSU’s Fetal Care Program provides in-utero and neonatal surgical treatments for over a dozen complex conditions that occur during pregnancy. It 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. Chon and Sun leveraged OHSU Doernbecher’s broad swath of expertise, building a team to perform the high-stakes, complex procedure.
A landmark procedure
For the remainder of her pregnancy, Aja went in for weekly checkups, monitoring and meetings with the care team to prepare for delivery, surgery and additional postnatal treatment.
The surgery required collaboration among multiple pediatrics specialties, including maternal-fetal medicine, neonatology, emergency medicine, intensive care, pediatric surgery, anesthesiology, pulmonology and cardiology.
“Early repair is crucial, but the baby must be stable. Fixing the diaphragm reduces the strain on the lungs and allows them to grow, which is necessary for a child to survive,” Sun said. “However, severe types of CDH have a very high mortality rate, and unfortunately many babies don’t live long enough to make it to surgery. We do everything possible to keep them stable.”
The Ayos' baby girl, Noah, was born on January 20, 2026, and immediately intubated and transported to the OHSU Doernbecher Children’s Hospital Pediatric Intensive Care Unit to be stabilized so she could be put on extracorporeal membrane oxygenation, or ECMO, a form of life support that takes over heart and lung function when the patient’s organs don't work on their own.
Against all odds, during her time in the PICU, Noah survived and grew stronger. Sun and pediatric cardiologist Patrick Evers, M.D., M.B.A., associate professor of pediatrics (division of cardiology), OHSU School of Medicine, performed the repair surgery just two days after birth.
The surgery was successful and she was taken off ECMO — but her fight had only just begun.
Less than three weeks later, her heart began to fail, leading to a second round of ECMO, an extremely rare occurrence in patients so young. Over the next several months, Noah’s condition was touch-and-go as she endured severe pulmonary hypertension, causing high pressure in her lungs’ blood vessels that strained her heart to the point of failure.
But in mid-March, after spending several weeks heavily sedated so her organs could rest — and being introduced to many new, specialized medicines to help her heart and lungs — she started to improve. Noah endured countless physical therapy and pediatric specialist appointments, as well as two procedures to place breathing and feeding tubes.
In July, after more than five long, difficult months in the hospital, the Ayos were finally able to take Noah home — a milestone they weren’t sure they’d ever get to experience.
“A lot of CDH babies don’t even make it to that first procedure, so we felt really lucky for how our journey has gone,” Aja said. “There are so many doctors, nurses and staff we owe so much to. Without our Doernbecher team, Noah wouldn’t have gotten here. And now she is thriving, and the funniest baby I’ve ever met!”
The Ayos return to Doernbecher once a month for appointments with Noah’s specialists, who provide ongoing care and monitoring to ensure her growth and development are on track — so far, so good.
“We’re going out on walks, taking her to restaurants and seeing family and friends,” Aja said. “It’s everything we ever hoped for.”
New procedure for CDH
Sun and colleagues across OHSU Doernbecher specialties are committed to expanding care for patients like Noah who have severe CDH.
Soon, OHSU’s Fetal Care Program will offer fetoscopic endoluminal tracheal occlusion, or FETO, a type of fetal surgery used to treat severe cases of CDH. When a mother is between 27 and 29 weeks pregnant, under ultrasound guidance, fetal surgeons will intubate the fetus and place a balloon to block their airway, which allows fluid to build and the lungs to grow. Several weeks later the balloon is removed in preparation for delivery and the post-birth repair surgery.
OHSU will be one of only three locations on the West Coast to offer this ultra-specialized procedure.
“It’s been shown that overall, having this procedure in utero improves chances of survival in babies with severe CDH once they’re born. It’s also shown that it can decrease the need for ECMO, which is a last-resort effort we always want to avoid, if possible,” Sun said. “We’re very excited to be able to offer this type of fetal surgery and improve outcomes for these babies.”
The addition of this procedure expands options for OHSU’s youngest, most fragile patients and provides much-needed hope for families like the Ayos.
“As hard of a situation as we were going through as parents, knowing that Noah was going through something harder, and that she was fighting every day, helped us stay grounded,” Ray said. “We’re so blessed and lucky our situation turned out this way, but we didn’t know if it would for a very long time. We just had to keep the positivity and believe that she could do anything, and she’s proven that she can.”
The Ayos hope that other parents who are facing the fear and uncertainty of a CDH diagnosis remember that having a medically complex child is a unique journey that comes with ups and downs.
“It’s important to remind yourself that these babies work on their own timeline and there will be a lot of very good and very bad days,” Aja said. “Just give them time and give yourself grace.”