After battling six years of infertility, including several attempted egg retrievals that led to the discovery of a rare condition affecting egg viability, Cheyenne and Zach Anderson of Grants Pass, Oregon, were overjoyed when their embryo transfer using a donor egg was successful. They were finally pregnant.
They learned their baby was a girl and celebrated the news with friends and family. But happiness and excitement quickly turned into concern when life-threatening abnormalities were detected during their 12-week ultrasound.
They were told it was a near certainty that their baby would not survive.
Unwilling to give up hope, they sought additional care from specialists at Oregon Health & Science University Doernbecher Children’s Hospital.
“Coming to OHSU, the conversation just shifted,” Cheyenne said. “The doctors were honest that they weren’t sure what would happen or if our baby would survive this, but that they would do everything they could to try and help her. From the second we arrived, we felt so cared for.”
After a challenging pregnancy journey, the Andersons would welcome a daughter, named Everest — and begin on the long road from hospital to home.
“Everest has touched almost every pediatric subspecialty we have at OHSU,” said Brian Jordan, M.D., Ph.D., associate professor of pediatrics (division of neonatology) in the OHSU School of Medicine, who specializes in neonatal intensive care. “There are not many places where all of this care is available in one location. We worked together every step of the way to weigh the risks and benefits and carefully consider order of operations to ensure she had the best outcomes.”
One in a million
Cheyenne continued to be treated at OHSU through the remainder of her pregnancy, traveling to Portland every two weeks for ongoing monitoring and care from OHSU’s Fetal Care Team.
Her pregnancy was not an easy one: The baby had an initial diagnosis of cystic hygroma, or a large fluid-filled bump on the neck caused by a blockage in the lymphatic system pathways. The baby later developed hydrops fetalis, a life-threatening condition where fluid builds up in other areas, like the lungs and heart. Additionally, there was concern for ventriculomegaly, a condition in which fluid filled cavities in the brain are larger than normal, as well as intestinal blockages.
“Cheyenne and her partner Zach had to navigate many uncertainties both during the pregnancy and following delivery,” said Andrew Chon, M.D., a surgeon with the Fetal Care Program. “It was a privilege caring for Cheyenne and helping her navigate such a high-risk pregnancy. Although the outcomes can never be assured, our entire fetal care team came together to support her through this challenging journey.”
Despite these obstacles, the baby continued to grow and develop. At 34 weeks, Cheyenne went into labor and was rushed to OHSU for delivery.
While the Andersons were overjoyed to finally meet their daughter, they knew it would be a long path to health and stability.
OHSU physicians soon determined that Everest was born with an extremely rare genetic condition that affects the development of various bodily systems, particularly the brain, heart and lungs, resulting in severe cardiopulmonary disease.
Everest spent her first 11 months in OHSU’s neonatal and pediatric intensive care units, or NICU and PICU, undergoing 10 surgeries to treat her condition during that time.
At every turn, she continued to fight and grow stronger, smiling through it all, her mom recalls. Life outside of the hospital started to emerge as a real possibility.
Returning home
Ensuring a child like Everest can live safely and independently is no small task. Caitlin Sawyer, M.D., a PICU hospitalist who specializes in caring for medically complex children, notes that months of education and preparation are required for this transition, as well as ongoing collaboration among pediatric care teams.
“In addition to Everest’s day-to-day care, my role was getting her strong and stable enough to go home,” Sawyer said. “Part of that process was setting her up with a tracheostomy, a surgically placed breathing tube, and a gastrostomy tube for feeding, as well as educating the family on what care would look like at home and ensuring they felt comfortable and confident.”
As they planned for the transition to life outside of the hospital, the Andersons say their goals of safety, comfort and sustainability have kept them grounded and hopeful, as has the ongoing support and guidance they’ve received from OHSU providers and staff.
They practiced administering medications, giving respiratory treatment, and other tasks necessary for Everest’s daily care. Additionally, the Andersons received a new hands-on training, developed by Wannasiri Lapcharoensap, M.D., associate professor of pediatrics (division of neonatology) in the OHSU School of Medicine, and Brittni Mortensen, N.N.P., that teaches parents how to respond to medical emergencies at home. Using a custom-made mannequin outfitted with a tracheostomy tube, families are presented with various emergency scenario simulations and given the opportunity to respond and practice the correct care steps.
In May, just shy of Everest’s first birthday, the Andersons were finally cleared for discharge and returned home as a family of three. They’ve spent the last month visiting with family and friends, enjoying meals and outings together, and getting Everest acquainted with their dog.
“We didn’t know if we’d ever get here,” Cheyenne said. “We don’t know how much time we have with her, but we just want her to be able to create meaningful experiences during whatever time she does have.”
Complex care under one roof
A feat of collaboration made Everest’s journey home possible, including specialized care from Doernbecher’s Fetal Care Team, Bridges Pediatric Palliative Care Program, NICU, PICU, and cardiology, pulmonology, otolaryngology, gastroenterology, anesthesiology and neurosurgery teams, as well as countless nurses and medical staff who provided support along the way.
OHSU houses these specialties under one roof, so families like the Andersons can get their baby’s complex care in one place rather than having to travel out of state — adding expense and stress to an already difficult endeavor.
“Everest and her family have made a big impact on so many of us here at Doernbecher,” Jordan said. “Their positive outlook, humor and strength as they navigated the challenges and uncertainties of the last year is inspiring. We’re looking forward to seeing Everest continue to grow and thrive in this next chapter.”
While Everest’s future is uncertain, the Andersons are committed to filling her life with as much joy, connection and love as possible.
“She’s living a whole new life at home now and is still our happy girl, always smiling and rolling with the punches,” Cheyenne said. “We’re just so grateful to everyone who has been a part of our journey and helped us get to this point.”