Navigating this amazing journey, Dottie’s parents, Brad and Caitlin, were by her side, backed by the medical team at Children’s Memorial Hermann Hospital where she was transferred after birth. From fetal heart diagnostics to the heart-wrenching uncertainties that followed, their daughter’s story serves as a testament to the extraordinary resilience found within the heart of Dottie.
The beginning
When Brad and Caitlin Burns discovered they were expecting their first child, it was pure joy – their hearts bursting with love and anticipation.
As Caitlin’s pregnancy progressed, she remained physically active and had regular follow-up appointments with her OB-GYN to ensure her baby’s growth and development were on track.
So far, there were no complications to worry about.
Then, in December 2018, at 18 weeks pregnant, Caitlin and her husband had an ultrasound to learn their baby’s gender – a special moment coinciding with their ninth wedding anniversary.
"We were so excited to learn the baby’s gender so we could share the news with our family during the holidays,” said Caitlin. “When we found out it was a girl, we were overjoyed and planned to celebrate afterward over dinner. However, the mood in the room shifted all of a sudden. Despite everyone's efforts to maintain a cheerful atmosphere, we could sense something was not right.”
During the gender ultrasound, Caitlin’s OB-GYN noticed anomalies in Dottie's heart, sparking immediate concern. She referred Caitlin to a pediatric cardiologist to investigate this further.
“We had two fetal echocardiograms, one at 20 weeks and one at 24 weeks,” said Caitlin. “From those tests, it appeared Dottie had a large ventricular septal defect and likely, Tetralogy of Fallot. The plan was for Dottie to have surgery a few months after birth. While heart surgery still had me worried, it seemed like the condition was well known, and I thought one surgery could potentially fix Dottie’s heart forever.”
The sudden news affected Caitlin and Brad, sparking concerns and uncertainties about the future.
Caitlin persevered with a normal pregnancy. Dottie remained active in the womb, displaying signs of being a big baby during measurements. Each ultrasound reiterated a consistent image – a ventricular septal defect, a hole at the bottom of the heart, with arteries appearing to overlap.”
Complications after Dottie’s arrival
On May 16, 2019, Dottie made her grand entrance into the world at a local Houston hospital arriving at 39 and a half weeks and weighing an impressive 9 pounds and 1 ounce.
“My husband had the privilege of cutting her cord,” said Caitlin. “I remember Dottie being placed on my chest, and in my eyes, her complexion appeared purple. Although she cried briefly, the nurses took her to another room for evaluation. When Dottie was born, she couldn’t keep her oxygen levels up. She was intubated and taken to the NICU immediately for further examination.”
After performing another echo on Dottie, and within 6 hours after birth, their pediatric cardiologist recommended Dottie be transferred to the Level IV neonatal intensive care unit (NICU) at Children’s Memorial Hermann Hospital. The Children’s Memorial Hermann Hospital Level IV NICU provides the highest level of care available for premature and critically ill newborns, as designated by the Texas Department of State Health Services (DSHS).
"The findings from the heart echos where I delivered Dottie differed from the observations after we were transferred to Children’s Memorial Hermann Hospital," said Caitlin. "When we arrived at Children’s Memorial Hermann Hospital, a new set of images painted a different picture.”
The medical team engaged in multiple discussions and collaborated on the best course of action, ultimately determining that Dottie’s condition was even more complex than initially anticipated.
Dottie’s complex heart diagnosis
Dottie was diagnosed with pulmonary atresia with intact ventricular septum, an Ebstein-like tricuspid valve and a large atrial septal defect (ASD), not TOF as previously suspected. Dottie was born with only the left side of her heart functioning. As Dottie was closely monitored in the NICU, Caitlin and Brad met with Jorge Salazar, MD, a cardiothoracic surgeon affiliated with Children’s Memorial Hermann Hospital and co-director of Children’s Heart Institute at Children’s Memorial Hermann Hospital. He detailed a comprehensive strategy, explaining how he and the surgical team would address Dottie’s heart conditions. The goal was to preserve the right side of her heart, repair the tricuspid valve and replace the pulmonary valve with a conduit.
On May 21, 2019, at just 5 days old, Dottie had her first open-heart surgery. After an 8-hour procedure, Dr. Salazar successfully preserved the right side of Dottie's heart and performed replacement connections. Dottie would need a subsequent biventricular repair surgery in the coming months. After surgery, Dottie recovered in the pediatric heart intensive care unit.
Shortly after, Dottie faced complications during transport as her oxygen levels fluctuated. The medical team made minor surgical adjustments in her room, but over the following 36 hours, she underwent multiple procedures in an attempt to stabilize her oxygenation levels. Ultimately, it was decided that she would return to the operating room the next morning to increase blood flow to her lungs, thus improving her oxygen levels.
“There were numerous people in Dottie’s room and several gathered outside her door,” said Caitlin. “We were informed her oxygen levels were dropping, and they were ready to initiate ECMO and transport her to the operating room. It was a terrifying moment. I observed in disbelief, unable to fully comprehend the situation. My husband and I cried and prayed until we had no more tears, and then we fell into a solemn silence. Despite our ongoing concern for Dottie, there was a sense of peace that enveloped us, a reassurance that God was with us, regardless of Dottie’s outcome.”
On May 23, Dottie had her second heart surgery to improve her low oxygen levels. After seven weeks recovering in the pediatric heart ICU, the Burns took Dottie home for the first time.
“We were beyond thrilled to take her home, but also knew that her journey was not done,” said Caitlin. “She was still in a fragile state and would require another surgery in a matter of months.”
More surgeries to come
Dottie continued to grow and develop. She started daycare/preschool, learned to walk and became a big sister. The summer after her third birthday (and over two years since her sixth surgery), Dottie started showing extreme fatigue and exhaustion after playing and complaining of headaches. After discussing her new symptoms with her cardiologist, the team decided that she needed a cath procedure to get clearer heart images. Dottie’s cath procedure was performed in October 2022 by Matthew Brown, MD, a pediatric cardiology interventionalist affiliated with Children’s Memorial Hermann Hospital. Dottie would need another surgical procedure to replace her outgrown valves.
Dottie’s seventh heart surgery went smoothly. With Dexter the facility dog’s assistance, Dottie was walking around just three days later. This surgery significantly improved Dottie's quality of life, giving her more energy and the ability to participate fully in activities with her friends.
Dottie Today
It has been over one year since her last surgery. Dottie, now 4 years old, continues to make remarkable progress. Dottie maintains regular visits with her cardiologist. While she will require more surgeries throughout her life to replace her valves as she grows, the Burns say they are beyond thankful that Dottie has her whole heart.
Beating the odds, Dottie not only has survived but thrived. The medical team's dedication, coupled with the family's faith, propelled Dottie into a life without limits. From ballet recitals to gymnastics to learning how to swim, she has embraced every opportunity, defying expectations at every turn.
“Dottie has achieved so much in the past year,” shared Caitlin. “The first thing Dottie wanted to do after receiving medical clearance to resume full activities post-surgery was to ride her bike. We took our first family airplane trip to meet extended family, explored Colorado for vacation and enjoyed a weekend cruise that Dottie and her brother loved. We were able to return to a sense of normalcy. Dr. Salazar’s goal for Dottie was to have a life without limits, striving for as much physical normalcy as possible. We have wholeheartedly embraced this limitless life over the past year, and it has been truly fantastic. We are grateful to Dottie’s care team for making this possible.”