Charlie’s Journey – The Best is Yet to Come….
Written by Staci Strand, Charlie’s mother
Sometimes the simplest of sayings, while you may not know it at the time, have different meanings each time it is brought into focus. There’s a lot packed into a simple phrase like, The Best is Yet to Come.
We are so blessed to have our two year old, Charlie here with us today. Charlie was diagnosed in utero with Hypo-Plastic Left Heart Syndrome during our 24 week anatomy scan. Essentially, he was born with half of a heart. His condition is extremely rare. To put it in perspective, 1 in 100 babies are born each year with a CHD; however, 1 in 4,344 babies are born annually with HLHS. Our excitement of welcoming our 2nd child into our family quickly turned into worry and fear of the unknown. We were given a few options, one of which was terminating our pregnancy. While my husband Kyle and I agreed that wasn’t an option, we knew that the road ahead would be uncharted, and the journey would be difficult.
On top of our diagnosis, our medical plan unraveled at 37 weeks and we had to make a quick shift in our delivery and surgical plan. We ended up at the Children’s Hospital at OU Medical Center in Oklahoma City. Nine hours away from home, separated from our two year old daughter, in a place we knew absolutely no one, we welcomed Charlie into the world on July 11, 2017. He arrived via C-Section and the room had every team on standby upon his arrival. Surrounded by 25 strangers, I heard the faintest cry and I finally breathed for the first time in what seemed like weeks. From that point on, I felt like we were in a full on sprint.
Charlie underwent two open heart surgeries in his first 9 days of life and on day 16 we almost lost him due to a perforation of his small intestine. He was sepsis. On top of recovering from his Pulmonary Banding and Norwood surgeries, this emergency procedure left Charlie with a 50% mortality rate (higher than his heart surgery a week prior). That evening, when he returned to his room after his emergency surgery, Kyle and I knew then and there, that he was destined to be here on this earth. He was a fighter! We began to understand that the journey would be filled with the lowest of lows and the highest of highs. And after 58 days, we made the trip home to Iowa to be reunited with our family and friends.
We returned to Oklahoma for Charlie’s 3rd open heart surgery, the Glenn at four months old. Currently, we are enjoying being under one roof as a family of four! As we look ahead, we know that Charlie will require another open-heart surgery in the next 12-18 months called the Fontan. Until then, we are working to catch him up with Speech and Occupational therapies. There is no rest for the weary when it comes to the heart life, but I promise you it is beyond fulfilling. It reminds me of the quote, “Life is 10% what happens to you and 90% how you react to it” – Charles Swindoll.
Tomorrow isn’t promised, but Charlie continues to show us that he is a fighter and teaches me something new every day. It is pure delight being his mom (and I’m sure Kyle would say the same about being his dad).
Being a heart parent in general is hard, there is no two ways about it. That being said, there is so much joy in the journey. My advice to newly diagnosed parents or early journey parents would be to reach out to others who have walked the path or find organizations like Heart Heroes or Help-A-Heart for support. I was lost in the beginning and full of self-doubt and worry until I found these organizations. I’ve learned a couple things over the last two years. There is power in numbers and feeling less alone in a journey we all are navigating blind and ask for help. We are all in this together!
And the end of the day, Kyle and I have relied a lot on our faith. We know the ending has already been written and it’s far better than you or I could ever imagine. In fact, it’s perfect and Kyle and I find comfort in knowing that, The Best is Yet to Come.
Written by Staci Strand, proud mom to Charlie Strand. Charlie was diagnosed in utero with Hypo-Plastic Left Heart Syndrome. This diagnosis is a very rare type of CHD in that, 1 in every 4,344 children are born each year with it. Charlie has had 3 of the 4 palliative care open heart surgeries, 2 catheterizations with stent placement, emergency abdominal reconstruct due to sepsis, 8 inches of his small intestine removed, chronic ear infections lasting 8 months – resulting in two ear tube placements, routine cardiology check-ups and several physical and occupational therapy appointments. Today, Charlie is working feverishly on his communication and eating skills by means of speech and feeding therapy. You can find him munching on crackers or “nana’s” since he will eat a banana at any time of day if you allow him. His favorite book is The Wonky Donkey and he does some sweet dance moves when you read it. He’s a night owl and therefore, mom and dad get extra cuddles in between the hours of 8 – 10pm (send all the coffee.) 🙂 He is ALL boy; therefore, you will likely find him with a scrape or bruise somewhere on his tiny body. Speaking of tiny. He is tiny, but mighty. He is incredibly smart. He loves being around people, especially his sister and is the light of our life. He continues to live each day wholeheartedly, which is so amazing considering he was only born with half of his. He is the purest example of strength and perseverance and I am honored to be his mom.