Tuesday, September 29, 2015

September 29 - Dear Nicholas Sparks (Guest Blogger Shereen Kostmeyer)

Dear Mr. Sparks,

    I want to tell you about the “best case scenario” of CDH. This is the phrase that both the pediatric surgeon and the neonatologist used when it was time to release my Micaela from the NICU.  My daughter is a 17 year-old CDH survivor.  She is spunky, musically gifted, an intellectual high achiever, kind-hearted and giving, the kind of kid that everyone loves. You know, the one who has every teacher in the school wrapped around her finger.   Her personality usually fills the room the second she steps in.  That personality is HUGE, yet she is a tiny little thing at 5’1” in height.   And, she just makes me smile.

    Most CDH babies are diagnosed in utero.  Micaela is in the 15% who are not.  I was a first-time mom, and was expecting a perfectly healthy pregnancy and birth.  That was terribly naïve.  I went into labor at 33 weeks, and arrived at the hospital too late to successfully stop my contractions.  My OB doc prepared me by explaining that she would most likely be just fine, but would be transported to our closest NICU an hour away to receive the best care possible for a preemie.  She was born only 4 hours after arrival at the hospital.  She only took a couple of breaths before stopping altogether.  She didn’t even cry.  It was like a scene out of a movie, the kind of movie that may or may not have a happy ending.  
     Although the hole in Micaela’s diaphragm was small enough to be closed without the use of a GoreTex patch, it was indeed large enough to allow the migration of both her stomach and intestines into her chest.  The surgery to place the organs back into her abdomen and repair her diaphragm went beautifully.  The left lung was comparatively large and healthy.  It was explained to me that this was due to a late migration of the abdominal organs, allowing the lung to develop fairly well.  She did, however, need a small piece of it removed so as not to allow this dead lung tissue to appear like a cancerous lesion on x rays later in life.  The appendix was also removed, which I believe is performed routinely to prevent later disease.
    Nearly every day in the NICU proved to be a progressive trend towards going home.  She was gradually weaned off of the ventilator, she never needed ECMO, she graduated from the NG tube before release,  she came home completely tube-free, with only 2 oral meds for reflux.  The first 5 years of her life were a bit of a struggle with asthmatic problems, bronchial spasms, severe gastrointestinal problems, and mild reflux.  The problems became less and less frequent over the years, and she has never required any further hospitilizations or surgeries.  This IS best case scenario for Congenital Diaphragmatic Hernia.  This is as good as this birth defect can possibly be.  She knows it, and she is grateful.  She does not waste the gifts that she has been given.  In fact, she is on a mission to share her gift with the world.  And she will tell the world about her fellow cherubs.  She lives her life mindful of all of the non-survivors, and all of the babies who are FIGHTING.
    Micaela is a student in the vocal department at the Mississippi School of the Arts in Brookhaven, MS.  
She dreams of a Broadway career in musical theatre, and she will do what it takes to get there.  She is a high school senior this year, is ranked 3rd in her class, and is currently applying to college musical theatre programs.
    Mr. Sparks, thank you for your kindness.  Micaela and I humbly ask that you join us in the fight to tell the world about CDH, and the need for more research.  Just one mention of Cherubs and CDH would do a ton of good.  And thank you for bringing YOUR gift to the world.
With kindest regards,
Shereen Kostmayer
Mom of Micaela Kostmayer, Cherub
Owner of Southern Bound Book Shop
Biloxi, MS

No comments:

Post a Comment