Thank You, Zach (The Zach Effect) The First Autobiography of Daniel Soto

The Beginning: Heart Surgeries and Syndrome Part One

Hi! My name is Daniel Enrique Soto Isasa. I was going to be named Daniela until my parents found out I was born as a male. My father used his younger brother's name for my middle name. I was born in a beautiful city called Arequipa in Peru on October 28, 1995. I may have never lived in that city, but I have many family members living there from both mom and dad's sides. I also have family members living in the capital of Peru, Lima, by the way, from both parents' side. My parents, brother, and I lived in Ica, but I do not have any memory because I was too young to remember. After all, we only lived there for a few years until we moved to the north. The only city I remember living in is Trujillo. I remember attending a private school call Fleming College (no, it was not a college). It was a kindergartner to twelve grades (US school grade). I made a lot of friends there, and I still remember them. Before I talk about a few of them, I will translate what my mother has told me about my heart problems that I had in a summary because she is the one that remembers the most.

My mother had me with a Caesarean Section (C-Section) because when my brother was born, she had C-Section with him too, and I was only born less than two years apart from my brother. My mother planned with a pediatrician when the day should I be born so the pediatrician can be there. When I was born, the doctors have to cut the umbilical cord, and the soon as the doctor cut it, I was hardly breathing because there was little oxygen between lungs and heart. Then the doctors rushed me to an incubator, and I was there for 11 days. Before leaving the hospital, the cardiologist told my parents that I have a heart murmur, and within time, my heart will heal by itself. I was also born with a weight of 4.4 pounds which usually a baby weighs 6.6 pounds, and I was very short as well, with 1 foot and 5 inches tall, which typically babies' heights are about 2 feet and 2 inches. For the first few months, I was okay. At three months, I had severe bronchitis, and after taking antibiotics, bronchitis repeated one after another. Then, the doctor told my parents I should see a better doctor in Lima because Lima had the best doctors. After doctors visited me and studied me, I was diagnosed with Tetralogy of Fallot (TOF). To be cured, I need to have surgery to weigh 28.66 pounds because there were not sufficient medical devices for little kids to have surgery at that time in Peru. With a lot of trusts, my mother created a nutritional program. Unfortunately, I was only gaining 0.22 pounds per month while my worsened my health. My mother gave me food, but sometimes I threw up; because my parents were worried and distressed and had to take me to the doctor to see what was wrong. Unfortunately, doctors could not see the problem until I vomited again. After that, thanks to God, my mother's friend told my mom that she knew a kid in the same city with the same illness, and she just came from Brazil after learning about his successful surgery. At that moment, my mother decided to do everything she could to take me to Brazil.

My father received a loan from the bank, in which his twin brother used to work there. My mother found out one of her childhood friends lives in Brazil because he was studying to be a cardiologist. Thanks to them and other people who helped us economically and with their prayers, my parents and I went to Sao Paulo, Brazil, on November 30, 1996. A woman from a parish that she was at with my aunt Patricia received us at her house in Brazil. My brother stayed with my grandparents in Ica because we were in Brazil. In the hospital, Institution Dante Pazzanese of Cardiology, the specialists took analysis from me again. They concluded my diagnosis was different. My diagnosis was called artesian pulmonary, which was more severe than TOF. To get better, I needed to have two surgeries. One was palliative at that time, and the other was definitive. Because surgery took so long, my father returned to Peru to work while my mother stayed with me. My first surgery was on December 19, in the same year, and was complicated and more prolonged than doctors thought. I had to be in ICU for five days. My maternal grandfather flew to Brazil to stay with us for Christmas. We came back to Peru on January 17, 1997, feeling much better and ready to follow instructions from the doctors to be prepared to have another surgery. After we got back to Peru and rested a bit, my mother took me to the doctors that the Brazilian doctors recommended. We went to a cardiologist pediatrician to see me periodically until it was time to go back to Brazil for the second surgery. We also went to a neurologist and a geneticist. The geneticist asked me to take a genetic exam, which resulted in a syndrome that showed my heart problems; in other words, my heart problems were one of the symptoms. My syndrome is called Velo-cardio-facial (VCFS), knows as DiGeorge syndrome. One of the most critical symptoms was being short in height (I will let you know how I solve that problem) and some learning disabilities.

For the next three years, I regularly visited the doctors, physical therapists, attending pre-school, playing with my brother, making friends, and preparing for my second surgery. In October 1999, one of my cardiologists' visits told us that it was time for my second surgery. My mother contacted rapidly to her friend who was still in Brazil; my father made another loan. Once more time thanks to all the people help us economically, my mother and I flew on November 8 to the same hospital in Sao Paulo. After we did the same routine physical tests, on November 23, it was definitively surgery. Although this surgery was the most important than the one before and opened the chest, my body reacted better to the surgery and did not have complications. I only need to be one day and a half at the ICU. The rest of the recovery was very well, and I came back to Peru on December 8. Even though the surgery was definitive, the doctors told us that I should always have a cardiologist because I possibly need a valve. I have checked with a cardiologist annually in every city I have lived.

Now, I want to share a story about a medication that I still take that helps my heart. I started taking aspirin after my first surgery because of my heart problems. I only had to take one aspirin (81mg) a day every day. Now, I could choose which time of the day I wanted to take, but I was recommended that I stick with a routine. My family and I decided I take it during breakfast so we can forget throughout the day. I only needed to take it with a beverage to swallow it, but there are also chewable ones. The aspirin is small, not difficult to swallow, nor has any taste. I do not need to make an appointment with a doctor to prescribe me the medication because I could easily buy it off the pharmacy counter. It's also cheap. I have to take aspirin every day for the rest of my life, which does not sound as bad as I thought.

This part of the story is about the good and bad effects of taking aspirin if I decided not to take it. If I do not take it for a few days, nothing terrible happens to me. But if I stop taking it for several months, my blood turns the same blood as everyone. This aspirin makes my blood to be more liquid than everyone, preventing clots from forming. See, if I had a papercut, I would probably bleed usually, but since my blood is liquid, I would probably lose more blood. It takes more time for my body to close the injury than usual as well. That is why if I know that I need surgery, I should stop taking aspirin for twenty-one days before the surgery. If I ever had a car accident badly, I need someone to take me to a hospital because I bleed quickly. If I need surgery without knowing ahead of time, the staff needs to put a coagulant in me. Whenever my doctor wants to analyze my blood, I must tell the nurse that I take aspirin.

Before you and I go, here is a link to donate money to children's heart foundation if you can so the children's heart foundation can continue helping children who were born with heart problems just I had, and there are other ways to help by looking around at their website as well: https://give.childrensheartfoundation.org/site/Donation2;jsessionid=00000000.app20126a?1400.donation=form1&df_id=1400&mfc_pref=T&NONCE_TOKEN=28C67424F9DF4E72DEE670A437FFD6AC