Conner’s story: Exceeding expectations for seven years and counting

At that second ultrasound, Jennifer was told that her baby boy Conner had a rare birth defect referred to as heterotaxy, a condition in which the internal organs are abnormally arranged in the chest and abdomen. In Conner’s instance, his heart was flipped and on the opposite side. In the 10 weeks that followed that appointment, Jennifer spent every Monday undergoing up to four hours of ultrasound evaluations and stress testing.

At 30 weeks of pregnancy, Jennifer met Dr. Charles Huddleston, SLUCare physician and cardiothoracic surgeon at SSM Health Cardinal Glennon Children’s Hospital, who would be planning the “roadmap” for baby Conner, assuring her that “we do this all the time.” A delivery date was scheduled at 39 weeks.

A Change of Plans

Within 24 hours of birth, Conner was transported to the Level IV Neonatal Intensive Care Unit (NICU) at SSM Health Cardinal Glennon Children’s Hospital, currently ranked as the top NICU unit – and pediatric cardiology/heart surgery program – in Missouri.* There it was determined that the original plan for successive corrective surgeries would not be ideal. What was truly needed for Conner was a heart transplant, and within a few weeks, he was put on the list. During the wait, there was much to be done. Conner had intestinal malrotation, asplenia, and an anatomy that no one had ever seen before – all that would need to be addressed in addition to his sick heart.

Jennifer kept a journal, and formed close bonds with her NICU primary nurses. “Those girls were my lifeline,” she recalls. “They took care of me and gave me confidence to go home at night.” She recalled one of her primary nurses stating, “When you clock out – we clock in. He’s our baby too, and you need to feel confident about how much we love him.”

Conner’s new heart arrived two months after his birth and his road to recovery kept him in the hospital for a total of six months where he faced multiple hurdles. Even after discharge, he returned with relative frequency for fluid overload, feeding difficulties, cardiac catheterizations, and surgery to repair his gut malrotation. The steady months of hospitalization necessitated ongoing occupational and physical therapy at home. At the time, Jennifer said she knew this would be his “life,” and that she is grateful for every positive step – every good day. “You find a way to make it work,” she said.

Beyond All Expectations

At that point, Jennifer was actively mourning what she feared she had lost: a strong and healthy child. But as he turns 7 years old this fall, Conner has proven those fears wrong time and time again. As Jennifer says, “He is a strong kiddo, both physically and mentally.”

Conner’s journey from a newborn whose very survival was in question to a fun-loving first grader who loves eating cheeseburgers and celebrating the holidays is nothing short of miraculous. As she says, “If you saw him, you wouldn’t know there was ever anything wrong with him.” For the most part his life is much like any other child’s.

Even so, he still requires annual cardiac catheterizations and testing to monitor his heart function. He’s a patient of the hospital’s Complex Care Medical Program that provides the ongoing comprehensive care he needs in a familiar and supportive atmosphere, which includes successfully helping him overcome his very understandable fear of hospitals and doctors. The friendships Jennifer forged with members of his NICU care team have remained strong, too. In fact, she considers one caregiver as a member of the family, and they vacationed together this past summer.

These days, Jennifer is in awe of Conner’s resilience, thankful for the care he’s received, and eternally grateful for the health he’s being blessed with. “Connor and God have a plan,” Jennifer says. “Each year he gets better. It’s really amazing.” And hopefully with the help of his care team at SSM Health Cardinal Glennon, he will continue to thrive for many years to come.

Learn more about our top ranked NICU.

Learn more about our top ranked pediatric cardiology program.

*Ranked #1 in Missouri by U.S. News & World Report, 2023-2024.