Month: April 2018

I was born with multiple congenital heart defects , which included, Ventricular Septal Defect, which is commonly referred to as a hole in the heart, (which I had several ) Pulmonary Stenosis which obstructs blood flow from the right ventricle to the pulmonary artery & Supraventricular tachycardia. which is a rapid heart rate. It was at 2 weeks old that I would have my first stay in the NICU as a result of complications due to my heart defects. Although they sent me home & said I would be fine, My mom’s maternal instincts told her that I was not correctly diagnosed & never gave up until I was properly diagnosed at age 2 with Long QT syndrome type 2 . LQTS is a disorder of the heart’s electrical activity. It can cause sudden, uncontrollable dangerous arrhythmias in response to exercise or stress. I am going to live a long and happy life despite my LQTS, but there are some risks and restrictions. I was told that I could never play contact sports or be on a competitive team.

Even though I was unable to play on the teams that my friends did, I found other ways to enjoy my free time after school. Hunting, fishing, and spending time in the outdoors were my kind of sports – the kind that I will enjoy for my entire life. My passion for the outdoors began to grow at a young age. I would spend the first 13 years of my life with no real complications, only frequent doctor visits and medicine 3 times a day. We would always ​carry an Automatic External Defibrillator with me anywhere away from home, just in case.

I went to a small Catholic middle school that was very proactive in being Heart Safe, thanks to my older brother Nick. He worked with local American Heart Association &​ ​Children’s Miracle Network to equip the school with Automated External Defibrillators (AED) and train the faculty on how to use them. My family and I thank God that the school was ready. One day at school, feeling weak recovering from the flu, I had my first ‘heart episode’ as I was running up the stairs. My heart went into ‘torsades de pointes’, a specific form of polymorphic ventricular tachycardia, and my heart rhythm became chaotic and no longer could beat effectively which stopped the blood flow to my brain & I became unconscious. Thankfully an AED was less than 5 feet away, and my​ ​teacher used the AED and CPR to save my life. I was taken by ambulance to Texas Children’s Hospital where I would spend the next 2 weeks in ICU. After I was stabilized, the Doctors implanted an Internal Cardiac Defibrillator( ICD ) and a Pacemaker. So I no longer have to carry around the external AED since I have a built in one. I consider it my “safety net” should my heart every start to beat irregular it will automatically correct the rhythm.

A few years have passed since all of that and I thank God that I am doing great! Although I still struggle with anxiety my faith has kept me strong through it all. The expert care from TCH, my heart medicine and frequent checkups, have kept me in good physical health. I truly have a passion for conservation and the outdoors, and I want to become a hunting and fishing guide or a national park ranger when I am older, so a program that focuses on heart health and the outdoor lifestyle is the perfect match for me!

Hunt with Heart provides once in lifetime opportunities that make life long memories. I will never forget tracking and hunting my first ram with my awesome guides and friends, Case and Tim. Hanging out with them, fishing for bass, and spending time at the beautiful Beaver Creek Ranch made my everyday anxieties melt away and gave me a newfound sense of freedom. But what truly makes Hunt with Heart special and sets it apart from the other outdoor adventures I have experienced are the friendships I formed with kids that have had similar struggles. Hanging out with friends who truly understand all the hardships that come from living with a heart condition gives me a rare sense of connection and community like no other. I am truly grateful to the Jim and JoAnne Elzners, Joe, Angelica, Case, Tim and everyone else involved for creating and operating​ ​Hunt with Heart. It is truly a special organization and all the love I’ve received from Hunt with Heart has kept me in good spiritual and mental health. This program will always have a special place within my heart. All the volunteers, leaders and families all work together to create a beautiful community focused on bringing strength to families like mine. I will be forever grateful. Thank you for the bottom of my HEART. -Garrett

Victoria “Tori” Tomson was born on August 20, 2004. Prior to her birth she was diagnosed with multiple heart defects which included Double Outlet Right Ventricle with Transposed Great Arteries, Mitral Atresia, Multiple ASDs and VSDs. A plan was put in place by Texas Children’s Hospital’s doctors to add a Pulmonary Artery band and perform an Atrial Septectomy immediately after birth. This was to be followed by Glen Shunt and Fontan surgeries as she grew older.

Immediately after birth, it was discovered that she would need a Tracheoesophageal Fistula repair. This meant that her esophagus and trachea were attached, which would cause her to choke while feeding on her formula. This took precedence over her heart surgery. This repair was done successfully two days after birth, which in turn delayed heart surgery for two weeks.
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Two weeks later, we were back to the original plan of action to address her heart issues. At two weeks of age, Tori underwent her first open heart surgery. Although the surgery was successful, Tori was faced with another major hurdle. While recovering from her first heart surgery, she contracted bacterial meningitis. This was the toughest of her challenges in her very short life span. Thanks to God, and the wonderful doctors and staff, she was able to miraculously pull through. After a two month stay in the hospital, Tori was finally able to go home.

Five months later, Tori was back at TCH for her Glen Shunt surgery. This surgery could not have gone any more smoothly. Tori had her second heart surgery and was home a mere week later. Tori and family were glad to be home in time for her first Easter.

At four years old, Tori underwent the last of the planned heart surgeries, the Fontan. This surgery presented Tori with a new set of challenges. The Fontan was successful, however Tori’s anatomy took some time to adjust. Tori was unable to digest fatty foods which caused doctors to put her on a completely fat free diet. Tori stayed in the hospital under close watch for nearly a month. Once her body adjusted and was able to digest normal foods, she was released to go home.
Although Tori has faced major challenges in her life, she has always had the heart of a diva. Tori is involved with many extra-curricular activities such as competitive dance, cheer, theatre, choir, student counsel, Best Buddies (serves as President), and church youth group. She is a well-rounded and diverse young lady.

She enjoys everything from shopping and getting nails done with mom to fishing and hunting with dad. Hunt with Heart has been a great fit for Tori and it has presented her with hunting opportunities that she may not have had otherwise. This organization is filled with people who genuinely care about giving these children unforgettable experiences. She has made lifelong friendships and memories with Hunt with Heart and for that, she and her family are eternally grateful.