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Never Missing a Beat
Aspiring journalist receives adult congenital heart care at Texas Children’s Hospital
Brittany Ramirez was 9 years old when she noticed something with her heart just didn’t feel right. Her family was living in the Rio Grande Valley at the time, and they took her to a cardiologist there who discovered a heart murmur and told them that it needed to be monitored. Brittany had regular check-ups throughout her childhood, but it wasn’t until she was 17 years old that she found out her condition was much more serious.
"I was diagnosed with Turner syndrome and learned that it was the cause of my heart murmur," Brittany explained. Turner syndrome affects only females and occurs when there is one normal X sex chromosome rather than the usual two.
Soon after the diagnosis, Brittany’s father got a new job in California, and she began receiving care there. "Once we moved to California, I started going into heart failure," Brittany said. "My cardiologists performed a series of catheterizations to monitor my heart. These lasted for some time, but unfortunately in the summer of 2019, things started to get very serious. The physicians told me I would need open heart surgery since my aortic valve was getting narrower and narrower."
The surgery to place a mechanical valve in Brittany’s heart took place when COVID-19 was spreading across the country, and she clearly remembers the overall anxious atmosphere. "The care team was worried about the possibility of a lockdown and wanted to be sure I received the surgery."
Following the surgery, Brittany’s saturation levels dropped and her blood levels declined. The only option for her at this point was another open heart surgery. "After the second surgery, I actually went into organ failure and had to go on dialysis. I didn’t wake up for three days," Brittany said. "When I did, I couldn’t move, and I couldn’t talk because I had a trach tube. All I wanted from that moment on was to get better at home in Texas."
Brittany’s care team in California referred her to a hospital in Texas for inpatient rehabilitation therapy. "I still felt weak and I still had the same symptoms. I just didn’t feel comfortable with the care I was getting and I thought, 'Maybe I can go about this a different way. Maybe it’s time to take matters into my own hands.'"
Brittany ran an online search for the best hospital that serves adults with congenital heart disease and found the Adult Congenital Heart Program at Texas Children’s Hospital. "I was so excited to learn that not only was Texas Children’s home to the number one pediatric Heart Center in the United States, but they cared for adults with congenital heart disease, too!" she said. "With the support of my mom, whom I call my patient advocate, I immediately faxed my documents and medical information to Texas Children’s Heart Center and scheduled an appointment."
Brittany’s first appointment at the Heart Center was with cardiologists Drs. Christopher Broda and Vincent "Vince" Gonzalez.
"When Brittany first came to our clinic, she was in severe heart failure," Dr. Broda explained. "Luckily, our team identified several issues we thought we could address to improve her quality of life. The surgical director of our Adult Congenital Heart Program, Dr. Edward Hickey, did a fantastic job mending her heart issues in the operating room, and our medical team came together to pull her through a tough post-operative course."
"From the very beginning, the Texas Children’s team did things differently," Brittany said. "During my first appointment, Dr. Broda said he would like for me to have an echocardiogram so he could see how my mechanical valve was functioning. My anxiety was through the roof after all I had been through, but Dr. Broda explained everything extremely well and made me feel so calm."
Both Drs. Broda and Gonzalez were in the room with Brittany when her images came back, and as soon as they took a look, they both smiled and high-fived each other. "My mechanical valve was doing just fine," Brittany said. "I had never felt so at ease or hopeful. I couldn’t be happier that Texas Children’s is in charge of my care."
"The stakes were incredibly high because you have a young lady who wants to get back to normal life but is in really decomposed heart failure with severe symptoms and her organs were failing," Dr. Hickey said. "It was a huge operation — about 16 hours. It involved taking down everything she had and completely reconstructing both sides of her heart. Remarkably, her heart had enough strength to separate from life support quite promptly, and recovery thereafter was much better than anticipated."
"Brittany is one of those patients who will be etched in my memory forever," Dr. Hickey continued. "Partly because of how unwell she was, but also because of how positive and determined she was. She was desperate to get back to her normal life. Her positive attitude, determination and stamina helped her help herself."
Dr. Broda added, "Though we are lucky to have skilled, caring staff and wonderful facilities, I think Brittany’s determined spirit and willingness to advocate for herself is the most important reason she went from being wheelchair-bound to dancing to her favorite music. It is certainly a privilege to be involved in her care, and I'm hopeful about what the future holds for her!"
Now 23 years old, Brittany is excited to finally be back to doing the things she enjoys, including collecting vinyl records, listening to music and watching her favorite television shows such as Modern Family and Parks and Recreation.
"What I love to do most is write," she explained. "There was a long period when I couldn’t write because I was basically paralyzed. Now, I’m returning to college and I’ll be going into mass communications. It’s really incredible."
"What Texas Children’s is doing with the Adult Congenital Heart Program is unique," Dr. Hickey said. "It was a vision of our President and CEO Mark A. Wallace and our Board to offer the same expertise and depth of resources to congenital heart disease patients regardless of age. That is very unique and long overdue, because patients like Brittany have historically had a raw deal with no real ‘home’ where they can be looked after in the same way they were as kids. Brittany’s story is a testament to the fact that what we’re doing is needed and is right."
When asked what advice she has for patients or patient families facing a similar diagnosis, Brittany paused and took a deep breath before answering. "There was a point when I was recovering from my open heart surgeries that I just felt like I couldn’t go on. I told this to my brother, and he told me the story of the tortoise and the hare. He told me that slow and steady wins the race and encouraged me to take it easy. He said that my recovery might be slow, but the tortoise is one of the strongest animals out there. So my advice for others is: Keep going. Have resolve. It will get better."