Hi everyone, my name is Taiya. I was born on February 26, 1998 with a congenital heart defect know as Tetralogy of Fallot. I have survived 2 Open Heart surgeries so far in my life. I had my first heart surgery when I was one week we old and my second heart surgery when I was 17 years old.

Diagnosis

I was born at 36 weeks and was known as a blue baby. They instantly did CPR/resuscitation on me and once they got my heart beating again, they sent me to UCLA Hospital. There, the doctors discovered that I was born with two holes in my heart and that I suffering from a congenital heart defect know as Tetralogy of Fallot. Then when I was one week old, I had my first open heart surgery in the hopes to repair the two holes in my heart. When they first went in, the surgeon noticed that the pulmonary valve that was in my heart was defective. Due to this, they sewed my pulmonary valve open to help with my blood flow. Throughout my entire life, I had no pulmonary valve, leaving me to deal with having a heart murmor. However, the doctors who did my surgery did warn my parents that I would eventually need a new valve; it was just a matter of when. Throughout all, I had lived a pretty normal life. I was an athlete that played basketball and did everything a normal kid would do. The only thing I really dealt with was getting physically tired a lot quicker. Then when I was 17 years old, my entire life changed.

Before Surgery

I was in my senior year of high school and my varsity year of playing basketball. Each year we had to get a physical done to make sure we were cleared to play. When I got the physical done, I would always warn my physician that I had a heart-defect but was totally healthy. Well this physician would not clear me and so I had to get cleared by a my cardiologist.

When I went to my cardiologist, he had explained to me that I was healthy however, my heart was starting to work way too hard. He then ordered an MRI to see where I was at and when I was going to be my next surgery. After I had my MRI, I was told by my cardiologist that my right ventricle had enlarged and that I was going to need another heart surgery within 3-8 months depending. Me and my family decided to meet with my surgeon Dr. Starnes to get a better idea of everything. He then explained to me that my right ventricle had tripled in size and that I needed a new pulmonary valve as soon as possible. I just remember being in shock as I had to say goodbye to my varsity year of basketball. I was then scheduled to have my surgery on December 14, 2015.

Right before I had my surgery, I started having symptoms. It started in late November and on Thanksgiving I ended up in the emergency room. I was experiencing severe chest-pain, shortness of breath, and my heart was skipping beats like crazy. At the ER, the doctor that treated me told me that I was having something called premature ventricular contractions (PVC’s) and that once I had my surgery, I would be feeling like myself again. So they then gave me a steroid to help with the pain and sent me home.

The day before my surgery, everything started to get very real. I remember telling my mom that I was scared, but also that I was glad that it was almost over with. I knew in my heart that this surgery would make me healthy again. I had tried hard not to think too much of the possible complications, but they were always in the back of my mind. Then on December 14th I had my 2nd Open Heart surgery. I had gotten an adult size pig’s valve and I was on the heart and lung bypass machine. I had my surgery done at Children’s Hospital of Los Angeles. The surgeon told me and my family that the surgery was going to be 3-5 hours and that I would stay at the hospital for 5-7 days.

After Surgery

Graciously, my surgery was a big success, and I was able to go home in 3 days. I was even told that I was one of the fastest patients to ever leave Children’s Hospital. Overall, the pain was pretty manageable, some days were worse than others. Thankfully, there was only two little complications that I dealt with when I was recovering from my surgery.

My first complication had to do with one of my medications. I was in a lot of pain that day, so I decided to take the “extreme pain meds,” that I was provided with. I figured that I would take the medication and go to sleep, thinking I would feel better. One important thing I forgot to do was that I was suppose to eat before taking these pain meds. Because I didn’t eat, I was then feeling nauseous and dizzy throughout the day. Later that night, I thought that maybe taking a shower would do the trick. Boy was I wrong!! Due to the fact that my pain meds had a blood thinner in it, taking hot showers was not a good idea. From this, I ended up passing out while taking a shower. I honestly just remember everything going black and seeing stars. I was probably out for like 2-3 minutes, but it took about 15-20 minutes before I got my full vision back. Afterwords, I started to feel like myself again and started getting my strength back.

My second complication had to do with my sutures. When they took the stitches out of my sutures, my sutures had popped open. The reason that my sutures popped open was because of the fact that at the time I was really skinny and stretching my body would cause my sutures to stretch themselves. Thankfully, this was an easy fix and I just had to take medication and use a special cream to help close my sutures back up again. Through everything, all my scars and sutures healed properly as I had no infections of any sort. Truth be told, recovery went way better than expected.

Where am I now?

I am currently a little over two-years post-op. I am 100% healthy, the healthiest I’ve ever been and I only see my cardiologist once a year. I am also a college student at College of the Canyons in Valencia, California, studying to become a chemistry teacher. I am extremely grateful for where I am right now and to be living a healthy life.

If there is one thing I have learned throughout all of this, it is to appreciate the little things in life and to never take anything for granted, as we never know when our time will come. I am beyond thankful for every day that I have because it is an indicator that I am still here.

want to share your story?

Learn more about our mission here.