The Story of a Warrior Princess

It was Labor Day weekend 2016. Lauren Seiler and her husband, Andy, were looking forward to spending the weekend with their three-year-old son and Andy’s family. Andy’s parents had rented a lake house on Marion County’s Lake Kerr, not too far from where the Seiler’s live. Lauren was 34 weeks pregnant with their second child, and this was supposed to be a relaxing weekend.

When the family decided to spend some time enjoying the beautiful weather outside, Lauren chose to stay in. She sat in the house worrying about Rory, the baby girl she was going to be delivering in less than two months. Over the past day or two, she hadn’t felt her move very much, if at all. When Andy returned to the lake house to check on her, Lauren was in tears.

“I could just sense that something was wrong with Rory,” said Lauren. “I told Andy how scared I was.”

Andy’s mom, who was with them on the trip, is a midwife with the same physician practice that would soon deliver Lauren’s baby, so she laid Lauren down and used different techniques to try and get the baby to move. When that was unsuccessful, she sent Andy and Lauren to the E.R. at Munroe Regional Medical Center. The baby passed the ultrasound and stress tests, so the family was sent home and asked to come back on Tuesday for some additional tests. When Tuesday came, Rory did not respond as well to the tests, so Lauren was rushed in for an emergency C-section.

Rory Elizabeth Seiler was born at just 3 pounds, 15 ounces. Juan Roig, M.D., a University of Florida neonatologist, was seeing patients that day at Munroe Regional Medical Center. He determined that Rory suffered from esophageal atresia with distal tracheoesophageal fistula. Rory’s condition meant that the bottom of the esophagus was connecting the stomach to the trachea, while the upper part was a blind-ending pouch. Therefore, the amniotic fluid was not being swallowed correctly.

In order to connect the esophagus to the stomach, Rory needed surgery, and she was emergently transferred to UF Health for that specialized care. After a careful assessment of her cardiac function, as well as other evaluations over the course of a day, she was an appropriate candidate for surgical repair. Saleem Islam, M.D., M.P.H., chief of pediatric surgery at UF Health, performed the surgery on Rory just three days after she was born.

“I had been at Munroe Regional Medical Center for the first two days of Rory’s life, as I recovered from my emergency C-section,” said Lauren. “I was so thankful to be released in time to see Rory and hold her before the big procedure. It made my day.”

Rory’s three-and-a-half-hour surgery was a success, and Lauren and Andy were so thankful to Dr. Islam and his team.

“Dr. Islam was amazing,” said Lauren. “After surgery, he sat our family down and went through each step of the procedure that allowed him to connect Rory’s esophagus together and separate it from the trachea. It was reassuring to see what was done during surgery and hear that it was successful.”

Rory spent the next 13 days in the Neonatal ICU at UF Health Shands Children’s Hospital, and the entire family was grateful for the care they received.

“From the beginning, everyone was incredibly accommodating,” said Dr. James Duke, dad to Lauren and grandfather to Rory.

Dr. Duke is also an orthopaedic surgeon in Ocala, Fla., and he says how impressed he was from the first interaction with UF Health.

“I live by the mantra that you never get a second chance to make a first impression, and we had an unbelievable first impression,” said Dr. Duke. “Everyone was very comforting, caring and professional. The physicians and staff made us feel like we were always in the loop with what was happening.”

The family is also thankful to David Burchfield, M.D., the chief of neonatology at UF Health, for the support and guidance he provided during Rory’s short stay in the NICU.

Rory got to go home much sooner than everyone expected and only spent 16 days in UF Health’s NICU. Dr. Islam explained to the family that, with this type of surgery, there is a good chance that a stricture could form from the scar tissue and create a blockage between the esophagus and stomach.

About 10 days after Rory went home, Lauren was feeding her and had a massive scare.

“I started noticing that Rory was getting fussier, especially when she was eating,” said Lauren. “Then, I was feeding her a bottle at home, and I’ll never forget the look on my baby girl’s face. She took two sips, looked at me with glassy eyes, and then she turned blue.”

Rory’s stricture had formed much sooner than anyone thought. Because the once-opened passage from the esophagus to the stomach had narrowed, Rory began choking on the milk. Jumping into action, Lauren turned Rory over and was able to give her firm back blows to dislodge the milk. Thankfully, Rory was okay, but Lauren was not going to take any more chances. She immediately took Rory to UF Health’s Pediatric E.R., where it was confirmed that she had a rare occurrence of a stricture at the surgical site, as well as a congenital narrowing further down that she was born with, which resulted in the early presentation. Rory was taken to surgery the next morning for her first esophageal dilation, an endoscopic procedure to open up the tightened areas. In total, Rory has now had five esophageal dilations at UF Health Shands Children’s Hospital – most of which are scheduled in advance to reduce the possibility of her developing severe symptoms again.

Today, Rory is doing well. She continues to gain weight and is the pride and joy of her parents, grandparents and her big brother, Welles. The strictures are progressively being stretched, and they are staying open longer than before every time.

“Esophageal atresia is but one of the many severe congenital malformations that our NICU team is very adept at caring for, and for which we have outstanding results and outcomes,” said Dr. Islam. “Rory has done very well, despite having a second abnormality in her esophagus, and we are thankful for that. She has a great family who provides wonderful care, which is a critical component of her doing so well. We are always grateful to care for babies with birth problems, and for the families that choose to come to UF Health and trust us with their most precious gifts.”

While the family prays for the day they’ll no longer need the services of UF Health Shands Children’s Hospital, they feel very fortunate to live in Ocala and be so close to our experts.

“The infrastructure at UF Health is amazing,” said Dr. Duke. “From the NICU to the pediatricians to the nurses and the support staff, we could not ask for better care. Dr. Islam is like a superhero to us.”

Dr. Islam will continue to follow Rory until she is eight years old – even if it’s just for regularly scheduled check-ups.

“It’s amazing to see how resilient Rory has been during the first four months of her life,” said Dr. Duke. “We call her our warrior princess.”