Corah’s Courage

January 06, 2016

In March 2015, Corah Smillie entered the world determined to beat the odds that were stacked against her. After Tom and Kristi Smillie’s 20 week checkup to discover the gender of their unborn baby, they received news that would change their world. Corah was diagnosed with diaphragmatic hernia, which is a rare congenital defect that causes an abnormal opening in the diaphragm. The exam showed Corah had abdominal organs in her chest cavity.

Diaphragmatic hernia occurs while the baby is developing in the womb. Abdominal organs such as the small intestine, liver and kidney take up part of the chest cavity. To correct this, emergency surgery must be performed to put organs back in their proper place. There is currently no known way to prevent this defect. It was devastating news for the family to receive after experiencing a miscarriage the previous year.

Imagine, shortly after hearing the words, “It’s a girl,” you are knocked off your feet with information that the life of your unborn baby is at risk. Tom and Kristi immediately did what they’ve always done; rely on each other, their family and their faith to get through the unknown. Each day that passed with no additional alarming news was a blessing. Kristi and Tom had friends that were pregnant around the same time they received this news, and it was hard for them not to be reminded that they may not have the chance to hold their daughter or experience moments their friends would have with their kids.

The Journey to Delivery

“There were so many unknowns when we first got the news,” Kristi remembers. While they waited for Baby Corah to arrive, her obstetrician’s office directed her and her husband to an online resource to help them understand the diagnosis and in hopes they would be provided with all the information they needed. Despite all of the support they were receiving, the Smillie’s struggled to say her condition out loud in the beginning – they soon realized saying it out loud was part of the journey.

Kristi and Tom then began the search for the best hospital to deliver Baby Corah at. Kristi remembers, “I was so overwhelmed by not knowing which hospital to deliver at. I obviously wanted to give my little girl the best chance possible at life, but there were so many hospitals and doctors.” A congenital diaphragmatic hernia awareness website called Breath of Hope put Kristi in touch with a patient-family that had been treated by the doctors in our The Chicago Institute for Fetal Health. The family pointed Kristi in our direction, noting that Marleta Reynolds, MD, and Nicolas Porta, MD, were the best of the best.

Kristi and Tom had their initial consultation with Dr. Reynolds and Dr. Porta on March 10, 2015. They discussed Corah’s condition and a care plan, reviewing all of the options and possible outcomes. Kristi says, “My husband and I came with a list of questions that we never had to pull from – Dr. Reynolds and Dr. Porta were so thorough. They were also so kind and compassionate. They were knowledgeable and confident and experienced. They couldn't tell us exactly what was going to happen to Corah, but they explained all the possibilities. They told us that ‘no two cases are alike,’ but they assured us that they would do everything in their power to help give our baby the best possible chance.” Kristi shares “That was the moment we knew without a doubt that this was the best hospital and team to trust with our baby girl.”

Welcoming Baby Corah

The next few weeks were a challenge, and on March 25, 2015, at 28 weeks, Baby Corah was delivered early at Prentice Women’s Hospital. Corah’s delivery team didn’t even need to use all of the equipment they had prepared, which came as a surprise. However, due to the severity of her condition, the Smillie’s weren’t even able to hold their little girl after before her medical team whisked her off to Lurie Children’s neonatal intensive care unit (NICU). Corah’s dad followed her over to the NICU and gently placed his hands on her to help contain her.

Then eight days later Corah was prepped for surgery and it went very well; in fact, Dr. Reynolds was able to move her organs back where they belonged and repair her diaphragm with a Gore-Tex® patch. Mom recalls, “The surgery went beautifully.” Though tiny, she was strong and she was ready to continue her fight for survival. Kristi remembers what Corah’s time in the hospital was like: “We felt like the doctors, nurses and other staff were an extension of our family. We can’t thank Dr. Reynolds and Dr. Murthy enough for caring for our little girl. The doctors pushed her and tested her tolerance, and they helped us see her strength. ” Finally, day 13 was the first time Kristi was able to hold her daughter for the first time.

“When we look at Corah.”

Today Corah is a happy, healthy baby. “We see so much joy and strength, and we are so grateful to see her live. She beams and grins all of the time, she is unbelievable,” Kristi says. “This could have torn a family apart, but this strengthened our bond. We communicated through this whole process, and it was an experience we will never forget. But we can’t imagine how we would have made it through such a trying time without our family, support from our Caring Bridge blog and the team at Lurie Children’s.” The joy of being parents to this tiny life is more than a privilege to Tom and Kristi Smillie – it is also an honor.

She says, “We didn’t have to fish around on the internet for information, and we didn’t have to guess. The medical staff at our doctor’s office made it easy to understand what was happening in our lives at that moment.” No questions went unanswered.