Jennifer Walkenhorst sat at her 20-week ultrasound, puzzled and confused after witnessing the first technician leave the room after viewing what came up on the screen, followed by the second, who took a look, and then a third. She ached to know what had left everyone “quiet” about her baby Conner, but was only given a referral and direction to have a second ultrasound at another hospital.
At that second ultrasound, Jennifer was asked if she had ever heard of congenital heart disease. She was then told that her baby boy 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 3-4 hours of ultrasound evaluations and stress testing.
At 30 weeks pregnancy, Jennifer’s blood pressure began rising. She was placed on modified bed rest, and directed to meet 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. Jennifer recalled visiting the intensive care unit, and meeting some of the staff, but ultimately, it was hearing the confident reinforcement she needed from Dr. Huddleston that, “we do this all the time.” She was scheduled for a planned delivery at 39 weeks.
Within 24 hours of Conner’s birth, it was decided to transport him to SSM Health Cardinal Glennon's Level IV Neonatal Intensive Care Unit (NICU) and it was determined that the original “plan” for successive corrective surgeries would not be ideal given his anatomy and physiology. What was truly needed for Conner was a heart transplant. Jennifer remembers hearing that news from her hospital bed, wanting so badly to hold her baby boy. She was finally able to do that on November 19, and after much evaluation and testing within that first two weeks of his life, Conner was placed on the list to receive a new heart.
During the wait for a new heart, there were lots of consults that followed. 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 6 months. He traveled between the Pediatric Intensive Care Unit and the Transitional Care Unit, facing multiple hurdles including feeding difficulties, RSV and fluid management issues. He was finally discharged two months later, right before Valentine’s Day. He returned over the next few months with relative frequency for fluid overload issues, feeding and vomiting difficulties, cardiac catheterizations with interventions and the necessary surgery to repair his gut malrotation. The steady months of hospitalization necessitated weekly therapy at home, including occupational therapy once a week; physical therapy every other week and dietician visits monthly to follow his progress. Jennifer says 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 says.
Conner is doing well according to his cardiologists and the family celebrated having his first birthday. Recently, Jennifer was presented with a 3-D model of Conner’s transplanted heart. This is the second model created for Conner’s anatomy; the first model was from his original heart. Both models have been pivotal to Jennifer’s understanding, and to her clinical team, as they continue to monitor Conner’s development and progress with his one-of-a-kind anatomy.
Jennifer is so grateful that she willingly gives back to the hospital that has been there for her and encourages others to do the same. “Cardinal Glennon’s blessings are too many to state – from the technological advances to accessible care,” says Jennifer. “But the greatest blessings are the people – who have this gift of balancing their clinical know-how with their passion and compassion for people. You don’t find that everywhere, and that’s a very important thing to families. I know my dollars will make a difference to everyone, and I give to help people who cannot afford the path and treatments necessary for their children.” She continues, “I was raised Catholic, raised to give to others, and all babies have a right to be here and receive the care they desperately need. There is no better place – simply no better place.”