First, I'd like to thank all of you who continue to support Shevoni through her fight. Whether it's by your thoughtful cards, emails, calls, messaging or through her CarePage and this blog - ALL of your prayers, comments and words of wisdom have uplifted us and helped us put one foot in front of the other when it seemed so hard to do it alone.
We've been so blessed to have seen Shevoni come this far. It seems only a short time ago we were listening to the doctor's trying to explain all the complexities of her condition and the severity of her combination of defects. "Impressive" is what they described her heart as, after the board got their first look at the results of her initial cardiac catheterization. At the time, I felt indifferent towards their word choice and their reaction to her cath lab. It made me feel as if Shevoni was more of a medical/science fascination for them. But now, I couldn't agree more and I like to think they saw prematurely what I later came to realize about her mesmerizing half-heart... "impressive" is only the beginning of Shevoni's imprint on the lives of those who've already fell so helplessly in love with her. These lessons in love are what she intends to show us so that we can live fearlessly and spread love passionately amongst one another and without discrimination.
Class is now in session.
THE HEART OF CHEVY
"Chevy" Charles was born June 16, 2011 with a rare complex congenital heart defect called Hypoplastic Right Heart Syndrome (HRHS). This consisted of a combination of more specific defects: Pulmonary Atresia with Intact Ventricular Septum (IVS), Tricuspid Valve Hypoplasia and a severe case of Coronary fistulae (sinusoids). She has 1 side of a heart, but puts up the fight of a warrior who has both. Her condition was diagnosed in utero after a routine ultrasound. In short, the right side (ventricle) of Chevy's heart is underdeveloped. This then caused poor heart muscle structure and led to other malformations of the heart as it attempted to pump blood through the pulmonary valve for transfer to the lungs. Without the right ventricle in our hearts, the de-oxygenated blood that is returning from our bodies cannot pump back through the heart and to the lungs where it can receive more oxygen, return to the left ventricle and back out to the body. Shevoni's coronary sinusoids were not detected until after birth, during her first cardiac catheterization. The presence of sinusoids makes her already complex condition, more unique. Because of the interruption in blood flow during the formation of her heart, Chevy has only one coronary artery. Normal hearts have two, one for each side. These arteries work to provide blood to the heart muscle at the surface of the heart, allowing the heart to function. Her one coronary artery also grew backwards, from the inside-out, creating what I've heard the doctors describe as some type of "retro-flow" of blood. A diagram of what a HRHS heart looks like is shown in the photo above. The photo below shows what a normal heart would look like.
There is not a "cure" for her defects and the right ventricle does not have the chance of growing as she gets older. HRHS was a fatal defect years ago but medical research and technology over the last few decades have found that they can use a series of palliative surgeries to temporarily allow the heart to function on its own by bypassing the flow of blood through the right ventricle. These series of open heart surgeries essentially create a single-ventricle functioning heart and would begin with the BT Shunt, the Glenn and lastly, the Fontan.
Shevoni's BT Shunt surgery was completed on June 22, 2011 at 6 days old. She stayed in the hospital for 2 weeks and was released just before the July 4th holiday. We went home with lots of equipment as she was fed through an Ng-tube for several months and received routinely visits from her home nurses. The 2nd-stage surgery, the Bi-directional Glenn was completed on November 2nd, 2011 at almost 5 months old. In typical Chevy fashion, she recovered rapidly and was released only a few days after. Both surgeries were successfully done at the Children's Hospital of Atlanta - Egleston by the immaculate Sibley Cardiac Team.
Since the Glenn she's been non-stop fun and able to keep up with her older siblings without a problem. She experienced a few developmental obstacles but with the help of her amazing physical therapist, she trampled right over them and is now considered "caught up" to other toddlers her age. She does tire easily and eventually takes a break once she starts panting too loud but after a few minutes, she's up and back at it again. As with most heart children, she is noticeably underweight (her nickname at the doctor's is "Peanut") but yet she is still very healthy and eats a ton. Chevy has brought so much joy to our lives and has enriched our souls from the inside out. I can't wait to see what more she has to offer to this world... time will only tell.
If she continues to do well with the Glenn, Chevy's next surgery (the Fontan) is projected to be somewhere between 3-4 years old.