DOCTORS GAVE THIS UNBORN BABY A 50-50 CHANCE OF SURVIVAL — THEN A LIFE-SAVING PLAN CHANGED EVERYTHING

When Casey went for a routine pregnancy scan, she never imagined she would leave with news that could change her family’s future forever. At just 19 weeks into her pregnancy, doctors discovered a large mass growing inside her unborn baby’s right lung. The condition threatened to compress his heart and healthy lung tissue, and his family was warned that his chances of survival might be only 50 percent. But a carefully coordinated medical plan would give baby Rowan a fighting chance before he had even taken his first breath.

A Routine Scan Revealed a Terrifying Diagnosis

Casey’s pregnancy had initially seemed relatively uneventful. Although she felt more tired than she had during her previous pregnancy, there had been no warning that her baby might face a serious medical condition.

Everything changed during an anatomy scan at approximately 19 weeks. The ultrasound revealed a large mass in the right lung of her unborn son, Rowan. Doctors identified the condition as congenital pulmonary airway malformation, commonly known as CPAM.

CPAM is a developmental abnormality of the lungs that occurs before birth. Many cases are manageable, but a particularly large lesion can occupy space in the chest, compress healthy lung tissue and interfere with the normal position and function of the heart.

Rowan’s mass was already large enough to push against his heart. His medical team was concerned that the pressure could lead to hydrops, a serious condition involving abnormal fluid accumulation in the fetus.

Casey’s local prenatal care team in western Massachusetts referred her to the Maternal Fetal Care Center at Boston Children’s Hospital, working in affiliation with Brigham and Women’s Hospital. The family now needed a plan that would address the condition before it became too dangerous.

A Family Faced With Uncertain Odds

As Rowan continued to develop, his mother made regular trips to Boston so specialists could monitor the mass and assess its effects on his heart and healthy lung tissue.

The doctors watched closely because the growing lesion was shifting the position of his heart and placing increasing pressure on his lungs. They also had to consider what might happen during delivery, when the baby’s lungs would begin functioning in a completely different way.

Casey later recalled being told that Rowan’s chances of survival were approximately 50-50. It was an incredibly difficult prospect for a mother who had not expected anything unusual during her pregnancy.

Rather than trying to predict every possible outcome, Casey and her medical team took the pregnancy week by week. Each assessment helped the specialists understand how Rowan was responding and what would be safest for him.

The team eventually determined that delivery needed to take place at Boston Children’s Hospital, where pediatric surgeons could respond immediately if the mass began to interfere with Rowan’s breathing or circulation.

Planning for Surgery Before His First Breath

The medical team developed a coordinated delivery and surgical plan involving maternal-fetal medicine specialists, obstetricians, pediatric surgeons and other hospital professionals.

Doctors were particularly concerned that the mass could become more problematic when Rowan’s lungs filled with air after birth. Additional pressure inside his chest could further compress the healthy lung tissue and heart.

To prepare for that possibility, Casey would deliver by cesarean section at Boston Children’s Hospital when she was approximately 38 weeks pregnant. The location was carefully chosen so Rowan could be transferred to an operating room without the delays that might occur if he were born elsewhere.

The plan required detailed coordination to protect both mother and baby. While Casey prepared for delivery, the pediatric surgical team was ready to evaluate Rowan and remove the abnormal tissue as quickly as possible.

For the family, the preparation offered a path forward during a period filled with uncertainty. They could not eliminate every risk, but the specialists were ready to act immediately when Rowan arrived.

A Newborn Taken Straight Into Surgery

When Casey’s cesarean section took place, the team followed the plan they had prepared throughout the pregnancy. Casey was able to see Rowan briefly after his birth, but he was then taken to an adjoining operating room for the procedure that had been arranged in advance.

Pediatric surgeon Dr. Terry Buchmiller performed a lung resection to remove the upper two lobes of Rowan’s right lung, where the abnormal mass was located. The operation removed the lesion while preserving the lower lobe so that it could continue functioning.

A chest X-ray confirmed that the surgery had achieved its immediate goal. Casey later recalled the relief of learning that Rowan’s remaining lung tissue was functioning as expected.

Although the operation was successful, Rowan still needed careful monitoring. He spent two weeks in the neonatal intensive care unit, where the medical team observed his recovery and respiratory progress.

His progress exceeded expectations. At just three weeks old, Rowan was cleared to leave the hospital and return home with his family.

Rowan’s Story Offers Hope to Other Families

As Rowan approached his first birthday, Boston Children’s Hospital reported that he was healthy, happy and surrounded by love. His journey had begun with a frightening prenatal diagnosis, uncertain odds and the possibility of life-threatening complications, but careful planning and coordinated specialist care gave him the opportunity to recover.

For Casey, the experience also highlighted how isolating a rare prenatal diagnosis can feel. Searching online for other families facing CPAM did not immediately provide the connections and reassurance she needed.

By sharing Rowan’s story, she hoped to help other parents find information and support when they face a similar diagnosis. She wanted families to know that they were not alone and that an alarming prognosis did not necessarily determine the final outcome.

Rowan’s experience is a reminder of the importance of specialist prenatal care and planning for babies with complex congenital conditions. His treatment was specific to his medical needs, and other children with CPAM may require different approaches depending on the size, location and effects of their lesions.

For Casey and her family, the most important outcome was simple: after a pregnancy filled with uncertainty and a major operation immediately after birth, Rowan was able to go home and begin his life beyond the hospital.

Source: Boston Children’s Hospital, “Rowan the Remarkable: Defying the odds with CPAM,” February 14, 2024.