Tara’s CDH Story

I was born with Congenital Diaphragmatic Hernia (CDH) in 1996. My mom didn’t learn anything was wrong until her 36-week appointment, when her OB-GYN sent her for an additional ultrasound after a routine visit. That scan revealed something concerning. At first, I was misdiagnosed with cysts on my lungs, and my mom was scheduled for a 39-week induction.

I was delivered at Prentice Women’s Hospital at Northwestern Memorial Hospital in Chicago, Illinois. Miraculously, I was born breathing on my own and did not need to be intubated immediately. Shortly after birth, I was transferred by ambulance to Children’s Memorial Hospital in Lincoln Park—now Lurie Children’s Hospital—where X-rays confirmed the true diagnosis: CDH.

Despite the diagnosis, I continued breathing independently and was stable enough to wait until I was two days old for surgery. The day of my repair was incredibly stressful for my parents, but my mom still vividly remembers my surgeon walking out of the operating room and giving her a thumbs-up from down the hall—a moment she will never forget.

I was discharged home from the NICU at just nine days old. My parents were both relieved and terrified to take home a fresh post-operative baby, especially when they saw other babies with CDH who had already spent months in the NICU. They couldn’t believe how fortunate we were.

I went on to live a completely normal life. My lung development was strong, and I played competitive soccer throughout my childhood and adolescence without any limitations.

Inspired by my journey, I became a registered nurse. I attended nursing school in Chicago and completed my pediatric clinicals at Lurie Children’s Hospital. During one of my clinical rotations, I learned that the surgeon who repaired my CDH at birth—Dr. Marleta Reynolds—had a patient on the unit. I was able to meet her, thank her, and tell her that she had saved my life back in 1996. Amazingly, she remembered my name and my parents. It was an emotional, full-circle moment I will cherish forever.

I am now a labor and delivery nurse and began my career at Prentice Women’s Hospital—the very place where I was born. While working there, I cared for several patients whose babies were diagnosed with CDH. Those families stayed with me and deepened my understanding of just how rare and fortunate my own outcome truly was.

Most recently, I gave birth to my first baby boy, Wesley. I had concerns about whether scar tissue from my CDH surgery would affect my ability to become pregnant or carry a baby. When I did become pregnant, I was referred to maternal-fetal medicine for close monitoring. Even the genetic counselor noted how little data exists on CDH survivors having children, as it is rare enough for CDH patients to reach adulthood and start families.

I am forever grateful to share that I had a healthy pregnancy. Throughout it, I had growth scans and ultrasounds focused on my baby’s diaphragm to ensure everything was developing normally. Today, Wesley is four months old and thriving.

My story is one of survival, gratitude, and hope. CDH has shaped my life in ways I never could have imagined, from the care I received as a newborn, to the career I chose, to the family I am now blessed to have. I carry deep appreciation for the medical teams who saved me, the resilience of my parents, and the families who continue to face this diagnosis today.