Physician Assistant Week: Caring for a young heart patient who beat the odds

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Photo courtesy of Courtney Sparks

When I joined Texas Children’s Heart Center in 2014, I knew this was a special place. As a physician assistant (PA) for Interventional Cardiology, or as most people commonly refer to it as, “the cath lab,” the doctors, nurses and advanced practice providers (APPs) I work with are some of the most amazing people you will ever meet – and so are the courageous heart warriors that we have the honor of taking care of. Patient families go through so much, and being part of their child’s journey is a rewarding experience.

As a PA, I interact with multiple teams in the Heart Center. Besides collaborating with our interventional cardiologists, I work with nurses, nurse practitioners (NPs) and cath lab coordinators to transition patients safely in and out of the cath lab. I also work closely with our cardiovascular anesthesia providers to make sure our patients are safe to undergo anesthesia for their procedures. When our patients go to acute care floors or the cardiac intensive care unit (CICU), I work with the teams there as well. When catheterization procedures are needed urgently, I collaborate with cardiology and ICU teams including other APPs, fellows and attendings to meet the needs of these patients as quickly as possible. Translators, chaplains and child life specialists are additional providers I rely on frequently for support. It’s not only cardiology patients who need heart catheterizations. I see patients from our neonatal intensive care unit, pediatric intensive care unit and patients from Texas Children’s Pavilion for Women. I have the opportunity to work with providers for those teams as well.

My primary role in the cath lab is facilitating the admission and discharge of heart center patients after their cath procedure and everything in between. Many of our patients who come to the cath lab have congenital cardiac anomalies. Some congenital defects can be intervened upon in the cath lab. Other times, we see patients come to the cath lab to gather hemodynamic or other data to help with surgical planning or patient management. Beyond the work I do as a PA, nothing is more special than interacting with our patient families and getting to know them on a personal level. Our patients are admirable – their resilience, strength and determination to overcome each and every challenge is palpable and inspiring.

When I met my patient, Easton, for the first time in 2015, I had just returned from maternity leave. Easton was 4 months old, and he was undergoing his third heart catheterization. As I carefully reviewed his chart, I realized he had a complicated anatomy. Instead of two ventricles working together to pump blood to his body, he had a complex variant of single ventricle which means half of his heart was doing the work for the whole body. His pulmonary arteries (the arteries in which blood flows from the heart to the lungs) were extremely small. This caused his body to form what we call collaterals to the lungs. At birth, Easton was not a surgical candidate for the surgeries that our single ventricle heart patients generally go through.

The interventional cardiologist I was working with was determined to do his very best to make him a surgical candidate so he could have the best chance at life. The cath procedure that day was successful, but it became clear to us that Easton would need repeated catheterizations to achieve the ultimate goal. These procedures would include dilating the collaterals and small pulmonary arteries as Easton grew.

Through his many trips to the cath lab, I got to know Easton and his wonderful family. I guided his parents through their son's hospitalizations. Easton has had 11 heart catheterizations. Every time, I helped the family in any way I could to improve his outcomes. I worked with Nutrition Services and he ultimately got a G-tube. I helped Easton’s family arrange physical therapy and speech therapy for him. Easton didn’t talk until later than average due to his many hospitalizations. I will never forget that moment when his mom called to give me an update on Easton. She said, “Hang on. Easton wants to say something.” As I waited eagerly, I heard a little voice that said, “Hi Miss Rachel.” I was amazed to hear him utter those words! I didn’t know his speech therapy had been so successful that he could now say our names! It took five years for him to become a surgical candidate for his heart anomaly that was completed last year. He is an inspiration!

Easton has had many ups and downs in his short life. But, little by little, he has reached some amazing milestones in his journey. While he no longer requires frequent trips to our cath lab, I am blessed when clinic nurses call me to let me know that Easton is here for his cardiology follow-up visit and he wants to say hello! Easton can be seen smiling, talking and always bringing us cookies he and his mom baked. He is an amazing, resilient little boy who has overcome so much. I am privileged to be part of his journey.

“When you have a sick child with many abnormalities, you look to their medical team for expertise and support, and that is exactly what Rachel did for our family,” said Courtney Sparks. “She was always there during our ups and downs, and she made sure all of our needs and concerns were met. Rachel was that friendly and familiar face who our family really connected with, and we still keep in touch with her today. I remember when I was pregnant with Easton, my doctors in Fort Worth told me that my son wasn’t likely to survive his combination of heart anomalies. Today, thanks to Rachel and the fetal center and heart center teams who took care of Easton at Texas Children’s, our son is a walking and talking miracle. In fact, our little heart warrior celebrated a milestone this year when he started kindergarten! He is a happy boy.”

Every year from Oct. 6 to 12, Texas Children’s celebrates National Physician Assistant (PA) Week, to recognize and honor all of our PAs for their immeasurable contributions to our patients and their families. Click here to learn more about Texas Children's Interventional Cardiology Program.