This is me, then and now. The whole story.
Children’s Memorial, now Lurie Children’s, has been a significant part of my life, past and present. I was born with a congenital heart defect, or otherwise known as a problem with the structure of the heart. Although this defect is present at birth, I did not show symptoms until approximately 2 months of age when I developed Respiratory Syncytial Virus (RSV). By the time I reached 15 months of age, these respiratory problems became persistent and I was constantly diagnosed with bronchitis. Along with my continuous struggle with respiratory problems I also developed an obnoxious seal-like cough and had prolonged episodes of gagging and vomiting on food. My parents knew this was not normal behavior for such a young child and after several opinions, doctor appointments, and every test known to man there was finally an answer.
The doctors discovered I was born with a right aortic arch, left ligamentum, and a ret esophageal left subclavian artery. These terms mean that the right arch coming off the heart was wrapped around my trachea and esophagus, which formed a vascular ring or left ligamentum. So in 1994 at Swedish American Hospital in Rockford, at the age of 2 ½ I underwent closed-heart surgery to repair the vascular ring and eliminate compression. This procedure went well and a smooth recovery followed.
In the years to come, I was able to regain a normal lifestyle with no complications but when I entered kindergarten similar symptoms reappeared. During snack time, I was always the winner of the chocolate milk-drinking contest, which usually resulted in me running to the bathroom with the teacher holding a wastebasket in front of my head. I could not consume certain foods like all the other kids my age without gagging or vomiting. My mom would have to come to all of my friends’ birthday parties to make sure this series of events would not occur and most times they would regardless. I suffered through numerous sleepless nights with a cough I thought would never subside. These signs immediately set a red flag off for my parents. My 6-year-old carefree demeanor and love for Barbies and Hanson was interrupted when the cycle of doctors, needles, and tests began all over again. With feelings of uncertainty with our experience in Rockford, my parents decided to proceed with testing at Children’s Memorial Hospital in Chicago.
We met with Dr. Carl Backer, the division head of cardiovascular-thoracic surgery, who then ordered a bronchoscopy and CT scan which revealed a Kommerell’s diverticulum (aneurysm) compressing my trachea and esophagus. Dr. Backer stated that patients with a right aortic arch and left ligamentum, like what I had repaired at age 2 frequently develop an aneurysm at the origin of the left subclavian artery. I just remember meeting in Dr. Backer’s office when he gave us the news; I was devastated to have to go through another traumatizing surgery. Although quite oblivious to my surgery at age 2, I was now beginning to grasp the idea of what was about to happen. As anxious as I was, Children’s Memorial whole heartedly made me feel comfortable in the situation I was about to endure. So May 20, 1998 at the age of 6 I underwent my second closed-heart surgery to remove the aneurysm. Back when I was 2 if the doctors in Rockford were aware of this concept, my second surgery most likely could have been avoided.
Recovery after surgery went smoothly until I returned post surgery for a follow-up chest x-ray which revealed fluid in my chest cavity. It turns out that during the repair of the aneurysm the thoracic duct was nicked and began to leak Chylous effusion. Also, needing repair, this would entail my 3rd surgery. After the repair, a chest tube was inserted to control and expel the fluid out of my chest. In addition to this lovely tube I had to be put on a non-fat diet. First, my diet consisted of fat free items and as the fluid subsided I was gradually able to add low fat items to my diet and eventually back to normal. I just remember coming home from the hospital and still having to maintain this diet and eat fat –free pretzels while my family dined on a pizza.
During my stays at Children’s, I developed several personal relationships with my doctors and nurses. They acted more like family then individuals who were just going to take my vitals, put medication in my IV, or essentially repair my heart. My stay was filled with mass amounts of coloring, crafts, and even learning Spanish from my nurse Janet. At one point, I even made all my doctors and nurses friendship pins. Looking back, one would think this experience would be terrorizing for such a young child, but Children’s did an exceptional job at distracting me from the everyday scares of a hospital. Indeed, it is much more than just a normal hospital, the staff goes above and beyond to make sure every child feels comfortable and attends to his or her every want or need.
Although Children’s memorial was such a prominent part of my childhood, now 21, I vaguely remember all the details and events that occurred when I was 6. In the ongoing years after the successful surgeries performed by Dr. Backer I was able to regain a normal life with no restrictions. All previous symptoms and gagging/vomiting episodes had vanished. There was still some narrowing on my esophagus from where the aneurysm was constricting the vessels, but the doctors deemed this normal and stated no complications should arise. I figured as already going through the ringer so many times, I was finally fixed. Everything had been going well until two years ago when I entered my first year of college at Loyola University Chicago. I was taking doxicylcin, an acne medication, and one night when I took it before bed, I noticed it felt like it had gotten stuck. I continued to drink more liquid until what felt like the pill being stuck feeling had subsided.
Not thinking much of it, I carried on with going to bed. The following day, whenever I drank or ate anything including water, I felt a sharp wincing pain that appeared in my shoulder into my back. I thought maybe I had just slept wrong. I was going home for the weekend for fall break anyways, so if anything I had my parents for guidance. The pain worsened to the point of not being able to bear it. My mom decided it was appropriate to contact Children’s for their thought on the situation. Soon enough, we were on our way in to the ER where tests where taken, but no results were apparent. A barium swallow test could contribute significant results to the process but there wasn’t a proctor available to perform it during the late hours we arrived. We were sent home to return the next day to have the barium swallow test along with a endoscopy.
From the barium swallow the doctors were able to immediately verify the narrowing on my esophagus, but we already knew that. From the results of the endoscopy, they were able to find erosion on my esophagus from the acne pill. When it got stuck, it just sat there and essentially “ate” away at my esophagus. I was admitted to the hospital where I then stayed for 6 days, I could not eat or drink anything for 3 days to help heal my esophagus. Being 18 at this point, my stay was a little different compared to my stays when I was 6. I was now fully aware of what was going around me and on my body. After these 6 days, which seemed like a century I again recovered fully and regained my normal routines. After this incident I was encouraged to keep a food diary and record any instance when food felt like it was stuck or other instances occurred.
I kept this diary for around 8 months until I returned for a follow-up appointment in June of 2011. Food continued to feel like it was getting stuck, episodes of acid reflux occurred more than anything, and constant chest pains evolved as well. When I returned for my appt and presented my cardiologist Dr. Tsao with the data who then decided to confirm the situation with Dr. Backer and see what he thought was the solution if any at all. I returned home and received the call a few weeks later, with news once again bearing the request for surgery, this would be number 4. Immediately tears filled my eyes, when I heard the news. Although my experience at Children’s was exceptional, the concept of another surgery made my anxiety level explode. Going through surgeries at a young age really does play a role on the psychological and emotional aspect of things. I knew if I wanted these problems to finally go away once and for all, this surgery was the only option.
So on July 27, 2011, 13 years later I underwent my 4th closed heart surgery at age 19 and again Dr. Backer was the one performing it. My left subclavian artery was to be rerouted to connect to my corrated artery to relieve the narrowing on my esophagus for once and for all. I stayed in the hospital for 6 days where I was in extreme amounts of pain. When I awoke from surgery I had an oxygen tube under my nose, a catheter, chest tube, and an IV. At this time, the pain medicine didn’t work and instead I experienced extreme itching as a side effect. Finally being placed in my room in the PICU around 8 p.m. my pain was not maintained until noon the following day. Being a mere adult this time around, I was fully conscious of every step along the way, which took a toll on me mentally, physically, and emotionally. This more than anything was very difficult to endure.
For now being 21 years old, it is a lot to go through often more than an average person experiences throughout a lifetime. But all these challenges have made me a stronger person and have encouraged my passion to pursue a career in the medical field. I have also obtained a volunteer position in PACU. In fact, my dream is to work in the pediatric cardiology department alongside Dr. Backer at Lurie’s. Children’s memorial has not only played a role in saving my life, but also helping me decide my future. The upmost gratitude is put forth from my parents and myself.
“Smile and let everyone know that today, you’re a lot stronger than you were yesterday.”