Each year Complete Fitness Results chooses a charity to donate the proceeds of the PUMPkin Workout. There are so many great charities out there, which makes it a tough decision. However, after reading the story of Ollie, the heart angel, there was no contest! This year CFR is donating the proceeds to The St. Louis Children’s Heart Foundation in memory of Ollie Hinkle. Continue reading for Ollie’s story written by his mom, Jenn.
Our beautiful boy was born on November 28, 2011, and three days later our lives were forever changed. As his pediatrician was assessing him for our discharge from the hospital, he heard a heart murmur. Further testing revealed a congenital heart defect: a hole in his heart the size of a nickel, called a ventricular septal defect, or VSD. We were hopeful that the hole would close on its own as he grew, as they often do; however, at 4 weeks he started having problems eating. His heart was working so hard to do its job that he had no energy left for eating. After three weeks of measuring and recording his food intake and bi-weekly weight checks at the cardiologist, he lost an ounce, and at 7 weeks he was diagnosed with heart failure and failure to thrive. He was admitted to Cardinal Glennon and a few days later we met his wonderful surgeon, Dr. Huddleston, who advised us that he would need to close the hole immediately. At 8 weeks old, heart warrior Ollie had his first open-heart surgery.
We thought we were in the clear after this relatively easy surgery, by the heart world’s standards at least, but at his 6 month post-op check, his cardiologist found his heart rate was half what it should be. It was discovered that he had a condition called Complete Heart Block, an interruption in the electrical communication between the chambers of the heart. When he was 8 months old, Ollie had surgery to implant a pacemaker. During the procedure, his heart surgeon was baffled when he couldn’t find an electrical charge for the lead placement anywhere on his atrium. So instead of the dual chamber pacemaker he intended on implanting, he connected only a ventricular wire. His surgeon had never seen this before, so more tests were ordered.
Ollie had a cardiac catheterization at 10 months, which revealed he had moderate tricuspid valve regurgitation and one partial anomalous pulmonary venous return, but more importantly, he had no electrical charge in his right or left atria, or atrial standstill. The result was more question marks and more tests. A few days after his first birthday, Ollie had another open-heart procedure to obtain an atrial biopsy. The tissue sample indicated that abnormal cells had invaded his right atrium and transformed his muscle fibers into damaged tissue, or degenerative cardiomyopathy. Again, the doctors were puzzled and they needed more answers.
We were in the process of setting up our next round of tests when, a few days after Christmas, Ollie woke up from a nap very sick. We rushed him to the hospital, and as it turned out he had the flu (common illnesses hit heart children much harder than those heart healthy). He was intubated due to respiratory distress from the flu, and it seemed he would be extubated within a few days. To everyone’s shock, however, he went into sudden cardiac arrest the following evening. His doctors stabilized him enough to put him on life support machine called ECMO, which would do all the work for his heart and lungs so they could rest. A few days go by, and he seemed be progressing; however, the night before he was supposed to come off the ECMO machine, he began to exhibit signs of brain damage. Our sweet Ollie had acquired total and irreversible brain and brain stem damage. That evening our heart warrior and hero became our heart angel.
He touched so many people in his short time here on Earth, the emotions of this defeat showing even on the faces of his most stern-faced doctors. We felt Ollie’s spirit all around me the day that he passed, and it brought me a sense of peace that I can’t even describe, knowing that my sweet boy was now a heart angel. We miss him so badly that at times it physically hurts. We find peace, though, in knowing that he fought so hard in his 13 months, and we were still waiting on test results that may have indicated a very long and painful road ahead, and now he could finally rest in peace. In between surgeries and hospital procedures, he was in and out of the doctors’ offices and ER. Ollie faced so many bad worst-case scenarios throughout his life, that we did live each day, knowing the very real possibility that tomorrow could be his last. We took pictures, videos, tried to live life as normally as possible. We savored every smile, every laugh, every wet, open-mouth kiss, every hug, the way he used to pat her back when he hugged his Mommy, how proud we were every time he’d lift his little hand to put food in his mouth (it took him awhile to learn that), watching him sit and play with his toys, splash in the tub, the way he felt in our arms, the sound of him cooing and laughing in his bed every morning, and (my favorite as his Mommy) the way that no matter where I was in the room or what he or I were doing, every time I glance over to check on him he was gazing and smiling at me with a love in his face that no description even begins to do justice for. Ollie taught us to love deeply and live life to the fullest. He was a sobering reminder that all the distractions this world has to offer and worrying over things that don’t matter, is a waste of our finite time here on this Earth. Life is so precious.
And this is why we’re trying to raise as much money as possible to fund research for congenital heart defects. Ollie’s life was a series of hospitalizations, tests, and battles, as his amazing doctors tried to identify and treat his rare heart conditions. More importantly, though, he touched so many people during his 13 months on this Earth. His life became a testament of true, pure, whole-hearted love. During his life, we raised over $3000 for The Children’s Heart Foundation, and in his passing, over $13,000 in donations have been made to the charity in his memory. We have chosen to keep his amazing, and ever-present spirit alive by doing our part in raising awareness for congenital heart defects among the community. Love you, our sweet heart angel, and our hero, Ollie ♥
Save the date of Saturday October 26th. Come for a great workout (10:30am) followed by a delicious brunch (11:30am), raffle, and pumpkin smashing (12:15pm)! Tickets are $40 and include the workout and brunch with mimosas (if you are of age). Contact [email protected] to get your tickets today. Space is limited so don’t wait! FREE T-SHIRTS for the first 25 people to sign up!