“I can finally live my life, and I feel like I have a second chance.”
– Kaitlyn, patient
My name is Kaitlyn, I’m 17 years old and I’m a junior in high school. I found out on January 17, 2024, that I had a left aortic arch with a right aberrant subclavian artery. Before I was diagnosed, I knew from a very early age that something just wasn’t right. I would constantly have issues eating and taking medicine. I noticed that I couldn’t eat meat or any large pieces of food without feeling like it was caught in my throat. Looking back on my childhood, I always avoided the foods that made me feel that way. This caused me to develop iron-deficiency anemia. I wasn’t getting the right protein I needed, and I was constantly tired and felt worn out. I would also have palpitations to the point where it would feel like my heart was beating out of my chest. I went back and forth to several doctors, and I would never get direct answers.
In November 2023, I went on a hunting trip with my dad. While we were sitting in the tree stand, I felt this heat rush through my body. I felt nauseous, dizzy and then my vision went black. I came to my senses quickly and my dad rushed me home. I went to the hospital and that’s when I was told my heart rate was very low. We did a follow-up with my pediatrician and they sent me to Nemours Children’s Hospital, Florida where I met Dr. Ebadi.
I don’t think I’ll ever forget the day I met her. I had seen countless doctors without answers, but my first visit with Dr. Ebadi, she gave me all the answers not only I had been looking for, but my family had been looking for as well. I had an echocardiogram done and she told me I had a heart defect and asked me if I had experienced any troubles swallowing. At that moment, I felt like someone was actually listening to me for the first time. When she told me that my artery was wrapped around my esophagus, everything started to make sense.
Treatment at Nemours Children’s
I had to undergo various types of testing to make sure that there were no other issues that could be causing my symptoms. I had to have a swallowing test, endoscopy, blood work, CT scans, ultrasounds, echocardiograms and I had to wear a heart monitor for a month. During these tests, it was determined that my issues were being caused by the compression of my esophagus, and I would need to speak to a surgeon. Dr. Ebadi then referred me to Dr. Nelson.
The moment I met Dr. Nelson and her team, I felt so comfortable. She explained everything perfectly and she let me talk. Dr. Nelson performed double open-heart surgery (division of aberrant right subclavian artery via left thoracotomy and implantation of aberrant right subclavian artery to right common carotid artery via median sternotomy) on July 11, 2024, to correct my heart defect. This was the hardest thing I have ever had to go through in my life and both Dr. Ebadi and Dr. Nelson have been by my side every step of the way. I can finally live my life, and I feel like I have a second chance.
My experience with the Nemours team has been absolutely amazing. They were constantly there for me and went above and beyond, especially while I was admitted to the hospital. During the most uncomfortable situations, they made it their top priority to make me as comfortable as possible. I couldn’t ask for better doctors and nurses.
Advice for Patients and Future Plans
My entire life up to this point I was always tired, worn out, had constant stomach pain, swollen lymph nodes, leg pain, iron-deficiency anemia, a constant sore throat and I was always dizzy. It interfered with my daily life, and it made me constantly miss school. I was always sick and rarely ate food.
My advice to patients is you know yourself better than anyone else does. If you think there’s something wrong, you should always speak up. Even if you can’t find answers now, don’t lose hope because if I can get through it, you can too.
There are so many mixed feelings about post-op and my recovery. It was one of the hardest things I have ever had to overcome. As time goes on, I am getting better, but there are still things I struggle with. I feel like so many people around my age group don’t understand what I’ve been through and it’s hard to talk about it. I also struggle with body image and I feel like since I have my scar, I can’t wear certain clothes. I feel like all people will see is my scar and I’ll get weird looks. While I know this is isn’t true and it’s something I’ll eventually overcome, it’s still a struggle I’m dealing with now. Both my parents took a month off work to help me after my surgery. It was a very eye-opening experience not only to me, but to them as well. They still make sure I’m doing okay, and I really appreciate that.
There’s so much I want to do when it comes to future plans. I want to do Army National Guard while also going to college for nursing, but I also want to be a dancer. Ever since I was little, my greatest passion has been dancing. When I had my surgery, I felt like a part of me was gone because I couldn’t dance for so long. I’ve always had a dream of becoming a backup dancer or a choreographer.
