If you knew you were never supposed to take your first breath, live to see your first Christmas, or see anything but a quick glimpse of the inside of a labor and delivery room, how would you live your life? Would you wake up every morning and decide to live it like it could be your last? Would you make an extra effort to enjoy the little things that we all too often take for granted? Maybe you’d prioritize the things that really matter in life like happiness and family instead of the size of your house and the amount of zeros on your paycheck. Maybe you would see life for the gift that it is. I know for certain that’s what I would do, because this is my reality.
I was given a zero percent chance to live two months before I was born due to a severe birth defect called Congenital Diaphragmatic Hernia (CDH). The defect prohibited development of the right half of my diaphragm which allowed most of my abdominal organs to enter my chest cavity and fill the space where my lungs should have been, leaving no room for lung development. After countless tests, the doctors told my parents that I had no lungs and that they had to make a decision about delivery. They were given two options; abortion or natural delivery, though the latter would give them the opportunity to hold me while I died. Not only did they decline abortion, but they decided to fight for my life until my very last second and pray for a miracle.
On December 20, 1996 at the University of Kentucky hospital, I began the fight for my life. Immediately after I was born, I made a nearly inaudible noise which led the doctors to believe I may have a minimal amount of lung tissue. A team of doctors hastily worked to clear out my airway, put me on a ventilator and rushed me to the neonatal intensive care unit (NICU). At four hours old, I became one of the youngest patients at the hospital to be placed on Extracorporeal Membrane Oxygenation, commonly referred to as ECMO, which is a heart and lung bypass machine that was essential for my survival. Four days later, on Christmas Eve, I underwent a major reconstructive surgery where surgeons moved my organs to their appropriate position, inserted a manmade Gore-Tex diaphragm which was sewn to my right ribcage, and to everyone’s surprise they discovered a nearly fully- developed left lung. After my surgery, my parents were told that I would most likely spend the next year in the NICU due to the severity of my condition. Despite the odds stacked against me, just one month later my parents’ prayers for a miracle were answered and they received the unfathomable news that I was healthy enough to be taken home.
News spread quickly of the “miracle baby” from the quaint town of Berea, Kentucky. Shortly after I was released from the hospital, my story received media attention including an appearance on the 700 Club on CBN and being named the Children’s Miracle Network baby of 1997. Growing up, I had more medical issues than the average child such as chronic acid reflux during early childhood, trouble gaining weight until adolescence, minor sight impairment, compromised immune system, asthma, debilitating migraines and multiple cases of bronchitis. Although that sounds like an extensive and unhealthy medical history, it is very minor for a CDH survivor considering a large percentage of CDH patients suffer from other underlying medical issues such as Spina Bifida, Cerebral Palsy and chromosomal anomalies. Despite my medical struggles, I have lived a normal life and overcame nearly every obstacle set in front of me.
For my whole life, I’ve known I’m different from most other people. Overcoming certain death, living with an abnormal amount of lung tissue, and being told, “You were saved for a reason and are meant to do something special one day” by everyone who hears my story isn’t exactly normal. A few weeks ago, my story became even more exceptional after I received results from a CT scan. The results from the scan showed that sometime during the past three years I have miraculously grown a full two lungs and a real diaphragm that now encases my Gore-Tex patch. A surgeon who has performed multiple CDH surgeries examined the results and confirmed that my body has completely healed itself, and aside from scar tissue, it looks as if I am completely anatomically normal.
Today, I am 20 years old which makes me one of the approximate 100 CDH survivors over 18. I’m currently a student at the University of Kentucky and plan on majoring in nursing. My dream is to someday treat a CDH patient and provide that family with hope by sharing my story and assuring them that miracles do happen.
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