Jackie was in her 26th week of pregnancy when she and husband Dan received what she calls the “most heartbreaking, devastating news anyone can be given.” In a prenatal scan at her obstetrician’s office, doctors noticed a mass in her unborn son’s chest. It was growing so large that it pushed his heart to wrong side of his body and compressed his airway.
The family was immediately referred to The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital. Within 24 hours, Jackie and Dan met with Dr. Aimen Shaaban, director of the institute and a leading expert in surgical fetal intervention. Dr. Shaaban, and the other specialists on the fetal health team, helped the couple to understand their baby’s condition. The mass was likely a congenital pulmonary airway malformation (commonly called CPAM), but the exact diagnosis could not be determined until the mass was removed. Without any intervention, their baby would have suffocated once the umbilical cord was cut.
The Chicago Institute for Fetal Health’s multidisciplinary team develops and implements treatment plans for pregnant women with fetal complications. The physicians on the team are passionate about improving the diagnoses, treatment and care of complex fetal conditions, and do more research in this field than any other center in Illinois and surround states.
Jackie’s care team included specialists in fetal surgery, maternal fetal medicine, neonatology, fetal and obstetrical anesthesia, fetal cardiology, genetics, fetal surgical nursing and fetal radiology. “Everyone we met with was compassionate, extremely knowledgeable and reassuring,” Jackie said. “From day one, we had a plan and it felt really good to have a plan when faced with such devastating news.”
Jackie would need an EXIT (ex utero intrapartum treatment) procedure at the time of delivery to ensure that her baby would be safely born and would never be deprived of oxygen.
She said that Dr. Shaaban thoroughly explained the risks such that she and Dan felt confident in moving forward with the surgery. “He made clear that he would do everything he could to save our baby, but it needed to be safe for me, too. We were willing to do everything we could to give our son the best chance at survival.” she said.
When she was 34 weeks pregnant, Dr. Shaaban and team performed what’s known as an EXIT-to-resection procedure. With Jackie under general anesthesia, Ben was partially delivered through an incision on her abdomen leaving Ben attached to the umbilical cord and placenta providing oxygen to him during the procedure. The fetal surgeons operated on Ben to carefully remove the mass from his chest and allow the normal lung to expand. After that, Ben was fully delivered and stabilized on a ventilator. The rare and complex procedure took about three hours and involved 32 health care providers. The surgery was a success.
After the operation, Jackie recovered well. Ben progressed every day while in the Lurie Children’s Neonatal Intensive Care Unit, or NICU, which provides the highest level of care to the most critically ill newborns in the region. The pathologist eventually confirmed that the lung mass was a type 3 CPAM which is a rare and potentially fatal condition without proper treatment. “Without Dr. Shaaban, Ben might not be with us today,” Jackie said.
After 57 days in the NICU, Ben went home with his parents, healthy and breathing on his own. Because of the Institute’s care, Ben “will be able to live a full life with no restrictions,” said Jackie. The family follows up with the NICU every few months to make sure Ben continues to meet milestones.
“He went from a tiny, helpless baby covered in wires and tubes to a thriving toddler throwing food all over our kitchen,” she said. “We have never been so happy to clean spaghetti and meatballs off our walls!”