Kenzie Davidson

From Fetal Diagnosis to Thriving Childhood

Sitting with 7-year-old Kenzie in the SSM Health Cardinal Glennon cafeteria, you would never know the journey she has been on since birth. Happy, energetic and proud of her scars, she has been writing her own story for as long as her parents can remember.

“Kenzie is our miracle baby that we fought so hard for,” comments Heather, Kenzie’s mom. “She’s our only child, conceived after a lot of years, through the grace of IVF, so while like any parent – we’re not oblivious to possible risks, we hoped since we finally had her that we’d be seeing less of hospitals instead of more,” laughs Heather.

At Heather’s 20-week ultrasound, the tech found their baby to have an enlarged heart. She was instructed to schedule a Level 2 ultrasound as soon as possible, so she had this done in Maryville, IL. “Our experience with that second ultrasound was horrible,” recalls Heather. “The tech kept taking more and more images for about 45 minutes to an hour without speaking. She left to get the doctor who proceeded to do the same. After another full hour, the doctor turned to my husband, Kyle, and I abruptly stating that our baby would need heart surgery as soon as she was born. Unprepared and dumbfounded, they were given time to process everything and were then escorted us out the back door of the clinic with a referral to the St. Louis Fetal Care Institute. It was December 20 – 5 days before Christmas and we had little to no hope or confidence that we could receive any more help or answers before the holiday.”

Heather and Kyle received a call that afternoon and traveled from their home in Brownstown, IL to the St. Louis Fetal Care Institute on December 22. Much happened during that visit. They had a fetal echocardiogram, toured the Neonatal Intensive Care Unit, met their cardiologist, Dr. Chetana Reddy, met their cardiothoracic surgery team – Dr. Andrew Fiore and Barb Kountzman, RN and received their baby’s heart condition diagnosis. Unborn Baby Kenzie had Tetralogy of Fallot with an absent pulmonary valve.

The next several weeks involved twice monthly visits to SSM Health St. Mary’s Hospital for non-stress tests and ultrasounds transitioning to weekly visits as delivery got closer. Pregnancy went smoothly and Heather prepared for an induction early spring. Kenzie was delivered by C-section on April 8, 2018. While her team anticipated possible needs of intubation or ECMO, Kenzie surprised everyone, requiring little to nothing but some oxygen support. “The transport team from Glennon came to get her from St. Mary’s,” Heather said. “They brought her to Glennon’s NICU – Room 1825. And that’s where we stayed for the next 31 days.”

“That first month in the NICU was mostly about Kenzie getting bigger,” Heather said. We knew she would need at least one major open-heart surgery, as a baby and more as she got older, but she would write her own story, which is always scary. She had that first surgery on May 23. She had a lot of trouble eating both before and after surgery, so we went home with an NG (nasogastric) tube and feedings. We also went home with oxygen and a monitor. I was happy to do whatever it took, and was grateful that otherwise, she had recovered so well.”

Kenzie’s second open heart surgery happened 4 months later in September, with a third following in October. They were able to go home early November and thankfully, stay home through the holidays. Kenzie was admitted to hospital in late January for some low oxygen saturations. A cardiac catheterization and unsuccessful balloon attempt of Kenzie’s conduit led to her 4^th open heart surgery on Heather’s birthday, February 26th. “A paralyzed diaphragm after that surgery led to another surgery in early March,” said Heather. “She recovered from that pretty well, just in time for one more surgery in April to give her a G-button. Recovery from that surgery required us to spend her 1^st birthday in the hospital. We were so grateful to the Child Life specialists and nurses on the Transitional Care Unit. They truly made it special, hosting a special party just for her. Even though we weren’t spending it the way we had envisioned it, we were surrounded by family – our Glennon family – at our home away from home.”

From 2019-2022, Kenzie was able to spend much more time out of the hospital. She returned to the heart center and other specialists regularly for clinic visits, and had physical, speech and occupational therapies weekly at home. In April 2022, when she was 4 years old, she had a chest x-ray during a clinic visit to evaluate some breathing and exercise tolerance issues she was having. Cardiologists and radiologists discovered a curvature in Kenzie’s spine. She was referred to the orthopedic team and Kenzie began therapy with a torso brace to be worn 23 hours/day. From 2022 through spring 2023, Kenzie had a lot of difficulty when it came to consistently wearing the brace. For example, after her 5^th open heart surgery and G-button closure surgery in May 2023, wearing the brace put pressure on her surgical scars. Unfortunately, without bracing, her curvature increased to 65 degrees, and by March 2025 it had increased to 75 degrees. In May 2025, Dr. Dustin Baker took Kenzie to surgery to place some magnetic grow rods along her spine. The goal of the procedure is to decrease the severity of the curve, provide support to the growing spine and prevent the curve from worsening. The rods are lengthened non-surgically using an external remote control, and it can be done in the clinic during an outpatient visit.  “During surgery, Kenzie’s team commented how her lung expansion increased drastically,” said Heather. “She grew three inches taller, her exercise tolerance improved, and her curvature is back to only 25 degrees.”

“This summer, we’ve been blessed to see Kenzie really enjoy many of her favorite things. She’s been able to swim, take care of the animals on our farm, ride her ATV and just be a normal kid,” said Heather. We were able to stop her speech therapy this summer and most of our follow-ups with specialists are down to every 6 months or as needed. Our first rod lengthening procedure will be in August. This journey with Kenzie really inspired me to care for others like our nurses here at Glennon cared for us. You can’t put a price tag on feeling like family when you’re dealt a hand like this….and I hope I can be someone like that for someone else when they need it. I will be graduating in October as a registered nurse and for now, I plan to work at the local hospital close to our home, but I’d love the possibility of working at Glennon one day.”