Admitted to the hospital for preeclampsia, Rachel Crump was determined to do everything to help her baby boy. During an ultrasound, concerns were discovered about her baby’s heart and lungs. “The ultrasound showed that the blood and oxygen were reversing from the placenta and it was delaying the baby’s growth,” said Rachel. Doctors told Rachel that she would need a C-section and there were doubts that her baby would survive delivery.
On July 8, 2020, Eddie was born at 28 weeks, weighing just 1 pound 3 ounces, and has been proving everyone wrong since day one. Eddie was diagnosed with bronchopulmonary dysplasia, or BPD, a condition that develops after an infant is born prematurely. When that happens, an infant’s lungs are not fully developed, and this can cause breathing problems. Though many babies born prematurely do not develop BPD, it is still a common issue among many premature babies – it occurs in about 1/3rd of infants born under 32 weeks of pregnancy.
Rachel and Eddie’s father, Charles, began to do all they could for their baby boy- researching the condition, talking to others and being his advocate. They learned that Lurie Children’s is home to a BPD program. Led by neonatologists Megan Lagoski, MD, and Nicolas Porta, MD, the BPD Program at Lurie Children’s is a collaborative team that provides comprehensive care for patients. The program brings together experts from a wide range of specialties, offering resources, clinical excellence and supportive care.
Rachel soon connected with Dr. Porta to discuss Eddie’s condition and to start the process to transfer him to Lurie Children’s Neonatal Intensive Care Unit (NICU). “After talking to Dr. Porta, I knew that Lurie Children’s was were Eddie was meant to be,” said Rachel. “Because there is a dedicated BPD program, Dr. Porta assured me that the team at Lurie Children’s could help him and it’s where he should be.”
Lurie Children’s BPD program addresses the complex needs of patients and families, with personalized care every step of the way. Families like the Crumps work with a consistent team to create a treatment plan that is tailored to optimize their child's health.
“It’s been a rollercoaster. When you really don’t know what is going on, what is going to happen and what you can do for your child as a parent, it’s just a stressful and scary situation,” said Charles. “When we got to Lurie Children’s, we got answers and a plan and comfortable about the whole situation. We got the hope we needed.” The family also found a support system with other families experiencing the same journey. “When we got to Lurie Children’s, we realized we weren’t alone. It became less scary. Not only with families in the hospital but through ParentWISE, I’ve connected with families who are at home and thriving and it’s been so helpful,” shared Rachel.
To help Eddie’s lung vessels open up so the proper amounts of oxygen could be delivered to his heart and lungs, doctors placed a stent in his lungs’ vessels and a balloon to help enlarge his airway – a process that he will undergo every 2-3 months as he grows. Eddie also underwent surgery for tracheostomy so he can continue to get full respiratory support more comfortably. “Since these procedures, Eddie has been more active and meeting milestones. It improved the outlook of his development,” said Rachel. In addition to these surgical interventions, through the BPD program, Eddie receives occupational therapy, physical therapy and speech therapy.
Rachel and Charles are hopeful for the future and look forward to the day Eddie can join his three siblings at home. Rachel said, “He’s so resilient. After everything he’s been through, he still wakes up with a smile and that says it all. Day in and day out, he’s showing us he’s a fighter. He’s always going to be a fighter.”