A Big Repair on a Tiny Heart

Elizabeth had always dreamed of becoming a mother, and when she first became pregnant last year, she was so excited to welcome a baby into the world. Not long into her pregnancy, however, she began to experience symptoms of pain and sickness. She asked her doctors if what she was feeling was normal, and after a series of tests, they discovered she had dangerously low levels of iron.

Elizabeth was diagnosed with iron-deficiency anemia and was told she would need infusions throughout her pregnancy to ensure she had enough nutrients for both herself and her baby. The protocol seemed simple enough, but Elizabeth’s complications would not end there. A few weeks later, she began feeling that something was still not right. Her doctors ordered an ultrasound and found a small bright spot on her baby’s heart. Diagnosed as echogenic intracardiac focus (EIF), her doctors believed it represented small deposits of calcium on the muscles of her baby’s heart. EIFs are rare, with an incidence in approximately 3 to 5 percent of all pregnancies, and they typically cause no health problems. Still, it was something her doctors wanted to monitor.

“They told me I would need to see a specialist and do ultrasounds to listen to his heartbeat regularly,” Elizabeth recalled. “This was early in my second trimester, but they wanted to watch him closely, and from there on out, I had regular ultrasounds and infusions.”

As the weeks progressed, Elizabeth began experiencing an abnormal level of pain. Finally, on March 2, 2022, at 39 weeks pregnant, she was induced and her baby boy, Saint Louie Luna was born. She saw him briefly before he was rushed to the Neonatal Intensive Care Unit (NICU).

“I was told there was something wrong with his heart and that they were going to do more scans,” Elizabeth recalled. “He had to be placed on a ventilator and I just remember there were tubes and wires everywhere.”

Elizabeth was encouraged to rest. As exhausted as she was, it felt impossible to do so without her baby by her side. Still, she eventually succumbed to sleep. When she finally awoke, she found herself surrounded by doctors.

“It was startling, to say the least,” Elizabeth said. “They spoke to me calmly and said that Saint wasn’t breathing on his own and that they wanted to transfer him because he needed a higher level of care for his heart.”

Saint had been diagnosed with total anomalous pulmonary venous return (TAPVR), which is a congenital birth defect in which oxygen-rich blood does not properly travel from the lungs to the left atrium of the heart. Typically, pulmonary veins, attached to both the lung and the heart, transport blood that has been oxygenated by the lungs into the upper left chamber of the heart (also called the left atrium), but for babies with TAPVR, the veins drain abnormally into other chambers of the heart, ultimately depriving the body of enough oxygen. Most babies with this condition also have an atrial septal defect, another type of congenital heart defect in which blood flows from the right atrium to the left atrium via a small hole. Saint had this condition as well.

These conditions require specialized surgery and a high level of expertise, so Saint was transferred to the Neonatal Intensive Care Unit (NICU) at CHRISTUS Children's and placed under the care of pediatric cardiothoracic surgeon Dr. Victor Bautista.

“Dr. Bautista explained that Saint would need surgery, but he wanted to wait a few weeks so he could grow as strong as possible before he operated,” Elizabeth said. “He monitored him closely the whole time, and once we made it to that two-week mark, it was time to operate.”

The surgery took place on March 16, 2022. During the repair, Dr. Bautista closed off the abnormal flow and used the existing pulmonary veins to create a new connection from the lungs into the left atrium, allowing the oxygen-rich blood to flow into the heart correctly so that it could properly travel throughout the body.

“The surgery was a success and you could see such a difference in my baby afterwards,” Elizabeth said. “He stayed in the PICU for three weeks and then in the NICU for another two, but he really healed quickly after that.”

Elizabeth said that as of now, no further surgeries are scheduled, although Saint will require regular check-ups with a cardiologist to ensure his veins continue to work properly.

“I was really distraught after he was born. It just broke my heart thinking about how he wasn’t able to breathe,” Elizabeth said. “But I was so thankful that he was able to go to CHRISTUS Children's. Their NICU felt really safe and it seemed like all the staff knew everything about him.”

Elizabeth brought Saint home for the first time in mid-April. Today, she and Saint are enjoying their time together, and she is thrilled for every milestone he reaches, including little things she will never take for granted. He will see a cardiologist at CHRISTUS Children's throughout his life to monitor his heart.

“He is the happiest little baby and he’s super smart. He talks and he kicks and he’s getting ready to crawl—all these things that, for a while, I never thought he would be able to do,” Elizabeth said. “I’m so grateful for all the doctors and nurses who helped us through this.”