When Troy and Katelyn Keaton found out they were expecting a baby in late 2020, the couple was thrilled. They already had a young son at home and were excited about their growing family.
At the time, Katelyn was working as a nurse near their home in Sealy, a small city located about an hour west of downtown Houston. Between work and motherhood, she felt busy and fulfilled, and her first trimester was relatively easy. She kept up with her regular appointments with her OB-GYN and always looked forward to her ultrasounds and the opportunity to hear her baby’s heartbeat.
But during her 20-week anatomy scan—an in-depth ultrasound that measures the baby’s growth and development—she could tell something was wrong.
“Although I’m no expert at reading ultrasounds, my nursing background gave me just enough understanding to become concerned something was off,” Katelyn said. “The technician kept going back to the heart and from what I could tell, it didn’t look like it had enough valves.”
Per health care protocol, the ultrasound technician could not deliver a diagnosis since the results needed to be read first by the doctor, but Katelyn began crying nonetheless.
“Between my mama gut and my nursing gut, I knew it was serious,” Katelyn recalled.
As soon as possible, she and Troy made an appointment with The Fetal Center at Children’s Memorial Hermann Hospital for an in-utero echocardiogram, which would provide a detailed image of their baby’s heart. Prenatal diagnosis plays a vital role in identifying critical cardiac defects, helps guide delivery planning and optimizes medical care for the baby.
The Fetal Center offers patients with congenital heart defects a complete range of prenatal testing and fetal interventions with a coordinated program for the mother and child before, during and after birth. The Fetal Center is a national referral center and an international leader in fetal diagnosis, fetal intervention and comprehensive fetal care for infants with congenital anomalies or genetic abnormalities.
In the days before her appointment at The Fetal Center, Katelyn spent hours online doing research herself. By the time the echocardiogram was over, she held her breath and waited as her fears were confirmed: their baby had hypoplastic left heart syndrome (HLHS), a serious congenital birth defect that affects how blood flows through the heart.
“HLHS is characterized by an underdevelopment of the left side of the heart,” explained Vidhya Annavajjhala, MD, assistant professor of pediatric cardiology at McGovern Medical School at UTHealth Houston, and an affiliated pediatric cardiologist and fetal echocardiologist with the Fetal Heart Program at Children’s Memorial Hermann Hospital. “Typically, the left side of the heart pumps oxygen-rich blood into the aorta, which is the large artery responsible for carrying blood into the rest of the body. Babies with HLHS do not pump enough oxygenated blood into the body due to the abnormalities present on the left side of the heart.”
The Fetal Center and affiliated team explained that their baby would need highly specialized surgery for his condition. Although she felt shattered inside, Katelyn tried to remain calm. She nodded along as they explained how she would need to be monitored by specialists for the rest of her pregnancy, and how shortly after birth, her baby would undergo the first of three major heart surgeries.
It was shocking, devastating news. Over the next few weeks, Katelyn and Troy did their best to remain strong. They were followed closely by Dr. Annavajjhala as well as maternal-fetal medicine physician Dr. Jerrie Refuerzo, MD, a professor of maternal-fetal medicine in the Division of Fetal Intervention in the Department of Obstetrics, Gynecology and Reproductive Sciences at McGovern Medical School and a specialist affiliated with Children’s Memorial Hermann Hospital.
“We are proud to be able to offer a multidisciplinary team for patients with complex needs, including maternal fetal medicine specialists, fetal diagnostics and imaging, geneticists, neonatologists and dedicated cardiac nurse coordinators to help provide comfort and reassurance to families throughout the process,” said Dr. Refuerzo. “We want the parents to meet the entire team and to be reassured by the full spectrum of high-quality care we can provide.”
The Keatons kept up with all of the recommended appointments and had even planned on getting a second opinion for their own peace of mind. But during one of the appointments, they were informed that the surgeon who would be performing their baby’s surgery was there, and he wanted to meet them.
“As soon as Dr. Salazar walked in the room, we knew we wanted him to do the surgery,” Katelyn said. “My husband and I instantly just felt more at ease, and the more he spoke, the more we felt reassured.”
Jorge Salazar, MD, is professor and chief of pediatric and congenital heart surgery at McGovern Medical School and an affiliated pediatric cardiothoracic surgeon at Children’s Memorial Hermann Hospital. Dr. Salazar serves as executive director of the Children’s Heart Institute at Children’s Memorial Hermann Hospital.
Dr. Salazar is well recognized in the field for taking on some of the most complex and challenging cases, and he and his team at the Children’s Heart Institute at Children’s Memorial Hermann Hospital offer innovative solutions for their patients with a commitment to delivering high-quality outcomes. In collaboration with pediatric subspecialists at McGovern Medical School, the affiliated team provides comprehensive care for newborns, children and adolescents, with a smooth transition into adult congenital cardiac care and has been named one of the top 25 hospitals nationally in pediatric Cardiology & Heart Surgery by U.S. News & World Report.
Katelyn recalled how well Dr. Salazar explained the surgeries their son would need, and how he was able to connect with them through shared beliefs and understanding.
“He compared the heart to an engine and explained how he would need to rearrange the pieces so that it could fully function on its own,” Katelyn recalled. “He was so good at explaining things and the ease in his voice just made us feel so much better. You can also tell that he truly cares about each and every one of his patients.”
After that day, Katelyn and Troy had a renewed faith that their baby would be OK. Dr. Salazar was easily accessible for questions and concerns, and the days and weeks passed as their son’s due date grew closer and closer.
Then, in early June 2021, during a routine check-up at her 38-week appointment, Katelyn casually mentioned that she thought she had been experiencing Braxton Hicks—contractions in the uterus that are often referred to as “false labor.”
“It turns out they were not Braxton Hicks,” Katelyn recalled. “They were real contractions, and I was having them every 15 minutes.”
Katelyn was given approval to go home and pack her bags. She gave her 4-year-old a big hug and told him that his baby brother was ready to meet him. Not long after that, she and Troy were admitted into Children’s Memorial Hermann Hospital in the Texas Medical Center.
The next morning, on June 9, 2021, Luke Keaton was born.
“I remember I was a ball of emotions,” Katelyn said. “I was so happy, but I also knew we would have just a short period of time with him before they had to take him to the NICU.”
Katelyn knew, however, that her baby was in good hands. The Neonatal Intensive Care Unit (NICU) at Children’s Memorial Hermann Hospital is designated as a Level IV—the highest designation possible—and works closely with a dedicated pediatric Children’s Heart Institute Intensive Care Unit (CHI-ICU) to give critical pediatric heart patients access to the highest level of specialized care available.
“We had been prepared for everything, but it didn’t make it any easier, we just knew we were making the right decision,” Katelyn said. “I remember going back to the postpartum room and it was just so quiet. That was so hard.”
Luke remained in the NICU until seven days after his birth when he underwent the first of the three major surgeries needed to repair his heart. This surgery, called the Norwood procedure, allows the right ventricle to do the job of the left ventricle and pump blood into the body, rather than just pump blood into the lungs.
“This is a temporary solution to keep enough blood pumping into the body while we wait for the patient to grow strong enough for the second major surgery, which we will typically perform when the patient is around 6 months old,” Dr. Salazar said.
Overall, Luke’s first surgery was a success. In addition to the care provided by Dr. Salazar and his team, Luke was followed closely by Avichal Aggarwal, MD, an associate professor of pediatric cardiology at UTHealth Houston and affiliated with Children’s Memorial Hermann Hospital. Luke recovered well until he was finally discharged home in July 2021.
“Everything was going well and between Dr. Aggarwal and Dr. Salazar, we felt confident that Luke was getting the best possible care he could,” Katelyn said. “We had him back at home and he was doing great, but then he got a minor cold when he was 3 months old, and he ended up needing to be admitted to the hospital.”
Because of Luke’s heart condition and his age, a minor illness such as a cold could have serious implications, especially for his heart.
“I remember Dr. Aggarwal coordinating Luke’s hospital admission making sure we didn’t have to wait in the ER, where we could potentially be exposed to more germs,” Katelyn recalled. “The care throughout this whole time was really just incredible.”
Over the next few weeks, Luke stayed at Children’s Memorial Hermann Hospital and was monitored closely until it was time for him to undergo his second major surgery in September of 2021. Called the Glenn procedure, this surgery involves creating a new pathway for blood from the upper half of the body to be able to travel directly into the lungs.
“When I think back on those surgeries, it was such a hard thing to see your baby go through all of that,” Katelyn said. “But Dr. Salazar and his team helped us see the light at the end of the tunnel. They kept us informed and involved in his care, and you can tell how much they truly care about you and your baby.”
Luke has one more surgery to go until the series is complete. The final surgery, called the Fontan procedure, will take place when he is closer to 3 years old. After this procedure is complete, blood from both the upper and lower body should go directly to the lungs, and oxygenated blood should travel directly to the heart. The single functioning ventricle in the heart would then only need to pump oxygenated blood into the body.
Although they still have this third surgery ahead of them, Luke is at home and living a normal, healthy life.
“He is truly doing amazing and is almost 2 years old now,” Katelyn said. “You would never know he was born with a congenital heart defect. People only find out when he pulls up his shirt to show them his cool scar.”
Katelyn said that she hopes that in sharing their story, she can give other families going through a similar diagnosis encouragement and reassurance.
“When you are pregnant and find out your baby has a heart condition, it just rips the floor out from under you,” Katelyn said. “But there is a light at the end of the tunnel. It’s been hard, but you’ve got to see the positive and the blessings out of any situation, and with Dr. Salazar and Dr. Aggarwal and their team at The Fetal Center, they’ve given us many blessings in our lives. Like I said, it’s been a hard journey but they made that journey bearable.”
To contact Children’s Heart Institute at Children’s Memorial Hermann Hospital, please fill out the form below.
The Children’s Heart Institute is a collaboration between the affiliated physicians at McGovern Medical School at UTHealth Houston and Children’s Memorial Hermann Hospital. Typically, patients are seen on an outpatient basis at a UT Physicians clinic with all inpatient procedures performed at Children’s Memorial Hermann Hospital.
The facts and the physician affiliations discussed in this article were confirmed at the time of the article’s original publication.