CDH International’s featured patient of the week is CDH Survivor Suzanne Simone. Suzanne has an amazing life journey to share, not only is she a singer, model, dancer, actress and photographer, but she is a warrior and had this to share about her CDH and life journey:
“My CDH story didn’t begin in the womb, or at least it wasn’t detected until I was six weeks old, which may be what saved my life & could be why I am alive today! It’s been said that I was turning blue and gasping for air when I was rushed into an emergency surgery where I actually died on the table due to a medicinal overdose from the doctors whom then brought me back to life, telling my parents that I would always be a very delicate person regarding the use of medications and such. That’s an understatement as I’ve always had to stick closely to a very clean diet & don’t tend to use medications because every time that I have I’ve suffered the extreme side effects & near death experiences of literally everything. After my surgery I was left with very little of my small intestines, creating quite a challenging lifetime of digestive issues as well as having damage to one lung. My Mom was told not to let me cry because my hernia scar could burst, so she slept with me on her chest each night in a chair by her bed, though I really don’t think that she got much sleep, and even then the doctors said that I may die within the first year of my life. It’s funny how something so traumatizing could lead to my Mom and I’s relationship being the talk of the town now. We truly believe that because of how meticulous she was during that first year, it shaped our relationship in such a unique way! She’s always been an absolutely AMAZING influence and support in my life, & now as adults we are Best Friends which I’m told is a relationship that is so rare to share with your Mother, but I still call her “Mommy” & I wouldn’t trade it for the world! And she told me that I was a little fighter from the very beginning!
AT MY HEART’S CENTER, WHO IS SUZANNE SIMONE
To be perfectly honest, I’ve always felt a deep force & driving connection to my life’s purpose and the messages that I send out the world whenever I’m utilizing my talents & skills! It comes from within & motivates me through every challenge & obstacle that I face! Growing up I was literally the only person that I knew who had a Diaphragmatic Hernia, because I was also said to be the only baby that lived that year with CDH, so all I really knew was that I was different & I had a scar. My food habits weren’t like the other kids, I slept on a tilted bed for easier digestion (which actually was a life saver as to this day I still sleep on multiple pillows as much as I can), swim classes were challenging because I couldn’t breathe very well from the pressure of the water when it was up to my neck, & through it all in the preschool choir I belted out the tunes so loudly that apparently I stole the show, even with my bad lung, but that was just the beginning!
Not knowing anyone else with CDH & knowing that I had died and been brought back to life really made me feel as though I had so many things to accomplish in my lifetime. It’s a very wise feeling to have at such a young age, but I was absolutely fearless everyone always said. At 3 years old it was recommended to my parents that I not pursue gymnastics which I really liked, (because of course no one really knew then the extent of the hernia complications which could surface), but because of my boundless energy Dance was recommended…and that was IT! Ironically, Dance was something that I not only loved, but I was really good at it! After which time I was also involved in Children’s Performing groups, Stage Performances, Festivals, Modeling, Talent Agencies. By the time that I was in High School I developed my own traveling show which not only was my way at 14 years old to make money without having to ask my parents, but catered to the senior citizen communities with the music of their youth! My show was called Broadway Babies and consisted of myself & one other partner (I want to say that I had around 15 partners throughout the many years Broadway Babies performed) as we included Broadway styled music, Hollywood Classic Movie styles, Tap Dance, Jazz, Dance, Ballet…& A LOT of audience participation, which was where the comedic stylings came in & the people would go wild! It was honestly a great way to spend my teen and young adult years because I really gained a sense of self as well as responsibility, not to mention a divine affinity and LOVE of people from all walks of life!!!
One of my most mind blowing performance related experiences in my life was being selected for 4 years as an apprentice of what was then Ann Reinking’s Musical Theatre Project, which later became known as the Broadway Theatre Project. The first time that I attended I was the youngest apprentice at just 13 years old, and then I attended again at ages 17, 18, & 19. Here I was able to train under Broadway Stars, Choreographers, Coaches & more. These were some of the greatest , most pinnacle days of my life as they solidified my love of the arts, because it was here that I felt completely accepted & in my element! I wasn’t the kid that had the long abdominal scar & ate weird food, I was a respected young adult learning from some of the most awe inspiring individuals including; Ann Reinking, Deborah McWaters, Savion Glover, Bebe Neuwirth , Marilu Henner, Gregory Hines, Gwen Verdon, & soooooo many more brilliant artists! It was life changing!
At 17 years old I began singing in a Professional Band with a former Las Vegas performer at a most dynamic & classy Las Vegas styled Supper Club. When I attended College I was awarded an Opera Scholarship while also studying Dance & Acting on the side, & I obtained a B.A. in Communications with a Performance Concentration. A friend of mine in my Opera Studio invited me to compete for the Miss University of South Florida Pageant, under the Miss Florida & Miss America Scholarship Program, which really opened up a new world! I did become Miss University of South Florida alongside holding additional titles while I competed in the Miss America Scholarship system all 4 years which left me debt free upon graduating College! The Pageant Systems are where I really continued to find my voice as a young adult, not only in my University but in society! At the time I was also a Sister of the Chi Omega Sorority and was singing professionally 5-7 evenings a week at Saddlebrook Golf & Tennis Club, a prestigious & beautiful location where I was able to extend my reach & versatility in multiple styles of music including; Pop, R&B, Motown, Country, & Blues. On the weekends I sang in a 13 piece Song & Dance Band for exquisite events including; Military Balls, Cultural Festivals, Platinum Weddings, Album Recordings, & more! You might say that my abnormality never held me back, & I’ve always wondered what my voice would be like if both of my lungs were 100%! Everyone has always told me that I move in a million different directions & that’s honestly where I thrive! And growing up my Mom was working as a Full-Time Realtor & I know that I was very fortunate to have the opportunities artistically that I did & they were backed by her loving support!
Currently I’ve been living in Denver, Colorado for the last 11 years & have been working as a Professional Fashion & Portrait Photographer for my day job since 2003 alongside my Mom, a Professional Photographer of 40+ years, & now Fiancé who is our Lead Videographer. All the way up to the Pandemic I was also pursuing my in person Professional Singing & Dancing endeavors & was extremely active as a Freelance Petite Model in the Fashion Scene. These days I’m working towards making virtual work until things sort themselves out, because due to being a CDH baby, I AM immunocompromised, so I’m extremely careful with my health.
When I look back at my life, as glamourous as all of my artistic lifestyles sound, & trust me they are, life hasn’t ever just been easy. My health is what it is today because of my mom’s attention to what was best for me as well as my attention to details as an adult. Anytime that I did stray off track or utilize medication, I’ve learned a very valuable & tough lesson due to the aftermath of it’s effects, so I work very hard to stay on top of my health always. So really, I was a miracle baby with a not so normal, but BEAUTIFUL life! Every challenge has been worth their struggle & I still feel as though I have SO much to give & offer to this world as a survivor & as a woman! Lastly, as a CDH surviving adult I only just found a handful of other surviving adults on Instagram & when I read CDH stories from families whom have lost their little ones, I cry uncontrollably as I realize just how precious this gift of life is. My heart is with each & every family whose babies survive & those who do not. It makes me wish there was more that I could do, but the strength of all of these families makes me want to be an even greater person always!”