Emily’s Story: How Our Daughter’s Heart Journey Led Us to CHRISTUS Children's

Seven years ago when Amber Elder found out she was pregnant with her third baby, she and her husband, Devin, were thrilled to be parents again. This time, the couple was expecting a baby girl.

“We were in New York celebrating our anniversary when I found out that I was pregnant with our daughter, Emily,” said Amber. “I took a pregnancy test, and to our surprise, the test came back positive. We were over the moon. It was a nice anniversary surprise while we were on vacation.”

As the months passed by, Amber’s pregnancy was smooth sailing. Her baby’s ultrasounds were normal, her heart was strong, and she was reaching her milestones. Although she looked like she would be a small baby, Emily weighed a whopping nine pounds when she was born. Every time she’d see her pediatrician for her regular visits, everything was perfect until she was 4 years old.

“When I took Emily in for her 4-year checkup, I thought everything would be normal,” said Amber. “Her well-child exam was fine until the nurse practitioner checked her heart. As she listened to my daughter’s heart, she could hear a swooshing sound between heartbeats. She told me that Emily had a heart murmur. Since she wasn’t showing any visible symptoms – like shortness of breath or turning blue – her pediatrician wasn’t too concerned about the murmur. He told me Emily was fine and we would monitor the murmur for right now. I followed his suggestion and we left it at that.”

In August 2021, when Emily was 6 years old, we went to see her pediatrician after she contracted hand, foot and mouth disease, a highly contagious virus that causes rashes. At that sick visit, her pediatrician could still hear a heart murmur. He suggested Emily see a pediatric cardiologist to get it checked out to ensure the heart murmur was not a symptom of a more serious heart condition

“My sister suggested that I see Dr. Jatin Patel, a pediatric cardiologist in New Braunfels, who had taken care of her daughter when she was an infant,” said Amber. “In October 2021, we had our first appointment with Dr. Patel. After running tests on Emily’s heart, he told me my daughter had an atrial septal defect. An echocardiogram confirmed Emily had a large hole between the wall that separates the upper chambers of her heart. Her diagnosis came as a big surprise to me and my husband. We had no idea our daughter had a serious heart problem. Emily’s pediatrician didn’t detect her heart murmur until she was 4 years old, and then two years later, we learn she has a hole in her heart. Six months before Emily’s atrial septal defect diagnosis, she didn’t show any symptoms that something was seriously wrong with her heart other than feeling a little tired.”

Before their daughter’s heart journey brought them to CHRISTUS Children’s where she had a life-saving procedure, the Elders were referred to different hospitals to treat Emily’s heart defect. Their journey would lead them down many winding paths and detours. 

In November 2021, one month after Dr. Patel diagnosed Emily with an atrial septal defect, Emily underwent a transcatheter repair procedure that uses a catheter and a small device to close the hole in her heart. But since her atrial septal defect was too large, there wasn’t enough tissue for the device closure. Emily would need a sternotomy (open heart surgery) where an incision is made through the breastbone (sternum) to allow the surgeon to reach the heart and blood vessels. After cutting through the sternum to access and close the hole in the heart, the sternum is reconnected.

“We thought the catheter procedure would fix her heart,” said Amber. “But since that procedure was unsuccessful, we followed the suggestion of a family friend and scheduled a consult with a cardiovascular surgeon in Austin. He told us that he would be able to perform a full sternotomy which would leave a pretty big scar on her chest. When we had our appointment with Dr. Patel in April of this year, he told us about Dr. Victor Bautista-Hernandez, a cardiothoracic surgeon at CHRISTUS Children's, who could perform this procedure with a smaller incision. Since Dr. Bautista could perform a mini sternotomy instead of a full sternotomy, this option was attractive to us because we didn’t want the full chest scar for our daughter. Ultimately, we decided to have Dr. Bautista be our daughter’s heart surgeon. It turns out it was one of the best decisions we made for our little girl.”

On June 1, 2022, 7-year-old Emily underwent a mini sternotomy where Dr. Bautista made a small, 4-centimeter sternal incision. A few hours later, he successfully repaired the hole in her heart that had been causing the murmur in her heartbeat all this time. After her surgery, Emily recovered in the pediatric intensive care unit where she spent two nights before she was strong enough to go home. Since her open-heart surgery, Emily is doing great and only has a tiny scar on her chest.

“Our daughter is doing amazingly well,” said Amber. “Since her surgery, Emily is back to doing stuff that she enjoys. She loves to draw, play with her two older brothers, and she loves to cheer. She recently joined a competitive cheer team and looks forward to starting second grade. As parents, we were nervous about our daughter’s open-heart surgery, but she has been a trooper in all of this. We had a wonderful experience with Dr. Bautista and his team at CHRISTUS Children's. The heart surgery team always updated us often, so we knew everything that was going on during the procedure. Dr. Bautista was knowledgeable, positive and reassuring, and the nurses were always attentive to our needs. Everyone involved in Emily’s care was sweet, patient and caring. One thing we have learned through our journey is how important it is to be a strong advocate for your child.”

Emily continues to have regular follow-up appointments with her pediatric cardiologist, Dr. Patel, who also stays in contact with Dr. Bautista-Hernandez and his team at CHRISTUS Children's.

To learn more about the Heart Center at CHRISTUS Children's, please visit: Pediatric Cardiothoracic Surgery | CHRISTUS Health