When pediatric heart surgeon Dr. Charles Fraser, Jr. was thinking about the area of medicine he wanted to pursue, having an important impact over the lifespan of child was front and center. He was also attracted to the heart— one of the body’s most complicated organs which can present significant needs. Dr. Fraser obviously likes a challenge.
Under his leadership, the Texas Center for Pediatric and Congenital Heart Disease was established in September 2018 at Dell Children’s. The program was enhanced in June 2019, when a 24-bed inpatient cardiac unit was opened at Dell Children’s. The unit includes state-of-the-art technology and is the first and only dedicated pediatric cardiac care unit in Central Texas. The Texas Center for Pediatric and Congenital Heart Disease is a focused congenital heart program based on a partnership between Dell Children’s, Dell Medical School at The University of Texas at Austin, and UT Health Austin.
Along with his dedicated team, Dr. Fraser is out to demystify myths around heart defects and disease in children. His mission? Help children and provide hope to parents.
AF: What are the differences between congenital heart issues and acquired heart issues in children?
CF: It’s been estimated that heart disease affects about one in a hundred people, so the statistics are really high. As far as identifiable birth defects, congenital heart disease is number one, so it’s common. And depending on where you are in the world, acquired heart disease in childhood can actually be quite prevalent.
AF: What happens when parents first learn of a heart issue in a child?
CF: When parents receive a diagnosis, they are in shock. Sometimes they ask, “Is there something we could have avoided?” They assume that these issues are rare. Once there’s a diagnosis, parents start to dig around and find out that heart issues are not rare. There’s a whole community of people in which heart disease has touched their lives in some way.
AF: How do parents commonly discover that their children do have heart issues?
CF: In sophisticated areas like Austin, we have very good fetal screening. Many of our patients are identified during fetal life. For example, the hardest, the most common category of defect is a hole in the heart. And, frankly, those are the more straightforward ones. But heart issues can also be extremely complex, including parts of the heart that didn’t form correct connections of the veins and arteries and problems with the valves. We have hearts that are backwards, and some are half-formed. We deal with a vast array of complicated abnormalities that occur.
AF: How do you help parents after a diagnosis has been shared?
CF: Our hope and our goal is to demystify the whole process. A continuum of care needs a lot of discussion about diagnostic information, which is reviewed with the families. We make a big effort to educate parents about what their child has. Of course, this approach is not unique to our specialty at all. But, when it comes to your child, it’s very hard to hear that a child has a heart defect. So, we teach parents about the problem and walk them through how we would recommend approaching it. If that means surgery, then we talk very bluntly about the surgery, how it’s done, and what our expectations are. We do this so parents are not left to conjure up scenarios in their minds or rely on the internet for information. It becomes a journey for the families.
AF: How do physicians typically discover heart issues in children?
CF: Of course, we don’t diagnose all of the problems during fetal life. There are some conditions that aren’t readily apparent right at birth which might be picked up later in childhood. Some issues cause symptoms, and some don’t. This is why children should have regular checkups where doctors listen to their hearts and measure their blood pressure. There’s also legislation that requires newborns to undergo certain types of screening before they’re discharged from the newborn nursery. And one of them is just to check the oxygen level in their blood. Some babies have heart defects detected that way.
As far as the acquired conditions, some patients present quite ill. Symptoms can include things like a shortness of breath, lack of exercise tolerance or, even worse, infections that can involve the heart. Those can sometimes be misinterpreted as a really bad flu. There are other rarer conditions as well.
AF: Once a child has been diagnosed and a family is facing the possibility of treatment, what is the family journey like?
CF: Over the evolution of the specialty, which is now coming on about 70 years, we’ve developed strategies to try to help all the conditions. We like to offer hope to the patients and families for just about every condition that presents to us. Some are severe and some are less complicated. But, it’s a spectrum. There are definitely things that we take care of that require only one operation. And then there are some that will require a series of procedures for the rest of the patient’s life. That’s a bitter pill to swallow for families. But overall, I think most people really want to know as much as they can.
AF: On a personal level, how do you cope with the magnitude of your vocation as a pediatric heart surgeon?
CF: As a surgeon, being able to do something with your hands that works out really well for a patient and their wellbeing is enormously gratifying. One of the things that was appealing to me was the definitive nature of what we do. Many times, we take a child with a particular type of problem that is very unstable. When the operation goes really well, the child is completely changed, and their physiology is essentially normal. They feel better immediately. By and large, kids just want to get better and get back to what they do. They bounce back.
On the negative side, it’s relentless. There’s never a time we don’t have to be on point because these are complicated situations and very delicate patients. Sometimes we’re helping tiny pre-term newborns. It can be challenging to be on the top of your game every single day. People in our field tend to be very self-critical. But the gratification outweighs all the negatives.
AF: What should parents do to stay on top of their children’s heart health?
CF: Statistically speaking, the probability that a child is going to show up in a pediatrician’s office with a heart problem is extremely low. I don’t think parents should have a full cardiovascular assessment for their child every time they go in to see the pediatrician for a fever. That’s why we have annual physicals in which a physician will listen for a funny sound or something that shouldn’t be there. Really, we should also be looking at blood pressure. Typically, kids don’t get a blood pressure measurement when they go to the pediatrician’s office, which always perplexes me. I think a child should have their blood pressure measured at least once a year. The bigger question in terms of numbers of lives affected by heart disease is the prevention aspect of childhood cardiovascular wellness. In an ideal world, parents would be concerned with heart health from the very beginning.
For more information, visit www.dellchildrens.net.
By Jennifer Hill Robenalt, editor Austin Family Magazine