After going through multiple pregnancy losses, including two ectopic pregnancies and two miscarriages, Misha and Jeff Anderson of Portland were overjoyed to learn they were pregnant again with a baby boy. But at an ultrasound appointment around 17 weeks gestation, they received difficult news: The baby’s stomach appeared to be developing in the wrong location.
The Andersons went back for a more thorough scan and discovered that in addition to his stomach placement, there were also concerns about his heart. He was diagnosed with heterotaxy syndrome, a rare congenital condition where the internal organs, such as the heart, lungs and digestive system, are abnormally arranged in the body. The condition can be life-threatening in infancy or childhood, and often requires treatment and surgical procedures upon birth.
“Being an emergency physician myself, I researched heterotaxy using medical resources to educate myself on the details of this diagnosis, what to expect and prognosis,” Misha said. “I learned it can be absolutely devastating for kids, so it was all very scary and difficult to process.”
Despite this serious diagnosis, Misha’s pregnancy developed and continued smoothly. At 30 weeks, she was transferred to Oregon Health & Science University to receive specialized care from the OHSU Fetal Care Program for the remainder of her pregnancy and baby’s delivery.
Delivering at OHSU
There are major delivery risks associated with heterotaxy; many infants can die at birth or in their early days of life, depending on the severity of the condition. Out of an abundance of caution, Misha was kept close to the Labor and Delivery Unit’s resuscitation room, and her care team came armed with a detailed plan for life-saving measures.
“For most people, seeing that all laid out on the white board in the room might be overwhelming, but for me it was so comforting to know we had a plan — a plan that I agreed with and felt really good about,” Misha said. “It was nerve-wracking, but we were as prepared and optimistic as we could be heading into his birth.”
To everyone’s relief, the resuscitation plan was not needed, and the Anderson’s son was born safely on Jan. 4, 2024. Misha and Jeff named him Bear — a tribute to his fortitude and resilience.
Complex care under one roof
Bear wasn’t out of the woods just yet: He was kept in OHSU Doernbecher’s Neonatal Intensive Care Unit for several weeks to ensure he remained stable, and began receiving his first cardiac treatments from the Pediatric Heart Care Team. Treatments included a computed tomography scan — or CT, which provides detailed X-ray images of the body — and echocardiogram, which provides ultrasound images of the heart.
Shortly after, Bear received his first open-chest surgery to regulate blood flow, called a pulmonary artery band. The surgery was successful.
Later that year, Bear underwent a major surgery on bypass consisting of three separate procedures at OHSU led by Ashok Muralidaran, M.D., section chief of pediatric cardiac surgery at OHSU Doernbecher Children’s Hospital, including a surgery to tighten his pulmonary artery band and a bilateral, bidirectional Glenn anastomoses, a surgery to improve blood flow and properly connect his pulmonary veins.
Once again, Bear persevered: He responded well to the surgery and was discharged earlier than expected.
“A lot of the decision-making for Bear was not straightforward, so teamwork and collaboration were necessary to determine the best course of action,” Muralidaran said. “By staging his surgeries in a very thoughtful manner, I believe we minimized the risk for complications and the number of interventions he may need over his lifetime.
“Bear is very resilient, strong and impressed us all with how smoothly and quickly he recovered.”
The rarity and complexity of Bear’s condition will require lifelong cardiac care, but he’s in excellent hands: OHSU Doernbecher has one of the largest and most experienced teams of pediatric heart specialists in the Northwest and is the only pediatric university hospital in Oregon and Southwest Washington to offer comprehensive heart care from fetal care to adulthood.
“When patients come to us with very complex heart disease, their care requires highly specialized providers that bring unique skills but can come together as one team,” said Lars Grosse-Wortmann, M.D., head of the Division of Cardiology and director of the Congenital Heart program at OHSU Doernbecher Children’s Hospital. “Increasing our range of pediatric heart care specialties is something we have really focused on here at OHSU.
“The research, teaching and care that we do is constantly evolving to ensure we can offer families the most leading-edge treatment.”
A bright future
While the journey managing their son’s health challenges was not easy, it was well worth it, the Andersons say. Now at 1 year old, Bear is not only stable, but also happy, healthy and thriving at home.
He will receive ongoing care from pediatric cardiologist Emily Yang, M.D., and a village of other specialists, including critical care physicians, nurses and respiratory therapists, who will continue to monitor his heart and determine if interventions or additional surgeries are needed down the road.
“Every day that goes by we realize even more how special he is,” Jeff said. “Despite all that he has been through just in his first year, he’s so happy and excited about life. He’s really a neat guy.”
The Andersons note that the positive relationship with their health care team made a significant impact on their overall experience at the hospital.
“The care team made us feel listened to and they really involved and integrated us into his care. Even with everything going on and so many other patients to care for, we always felt like a priority to them,” Misha said. “I felt not only medically supported, but emotionally supported, as well.”