They say love comes in many shapes and sizes, but what no one tells you is that love comes in many different abilities, too. For us, our child’s abilities depended on so many factors—the diagnosis, the surgeries, the repairs, and countless medical interventions. Receiving a traumatic medical diagnosis for a child you’ve longed for is nothing short of heartbreaking. It’s terrifying, overwhelming, and completely life-changing. It’s a test of research, resilience, and above all, unconditional love.
On July 2nd, 2013, our dreams began to take shape. We suspected I was pregnant for the first time, and within hours, that hope was confirmed. Excited but nervous, we went straight to the emergency room. Just two days later, our world crumbled. We were told we were losing our first child. I was told to expect a natural delivery, and on August 10th, 2013, I saw our baby for the first—and only—time during a complete miscarriage. Within 24 hours, I underwent an emergency D&C—my first surgery. The pain of losing a child is indescribable, life-altering, and unbearable. It changed my marriage, my family, and the way I love forever.
The following year brought more heartbreak. We lost another child, adding to a total of three early pregnancy losses. We visited not one but two IVF specialists, both delivering the same difficult news: conceiving and carrying a child naturally would be nearly impossible. Determined, we started with blood work to understand what was happening. Over $1,200 later, we were in debt, but our dream of a family wouldn’t be stopped. Every day for five agonizing years, I cried. Yet, despite repeated discouragement from doctors, we never lost hope. And then, a miracle happened.
On January 25th, 2017—just two months shy of our last scheduled IVF appointments—we discovered we were pregnant naturally. Weeks of testing confirmed our child was healthy and progressing normally. Overjoyed, we shared our excitement with friends and family. But at 24 weeks, during my anatomy scan, life threw another challenge our way. Our daughter, Ava Lynn Grace, was diagnosed with Spina Bifida, hydrocephalus, and Chiari Malformation type 2. We were terrified, overwhelmed, and unsure of what her future would hold. Doctors repeatedly presented termination as an option, given the potential complications: paralysis, bowel and bladder issues, cognitive delays, and more. I remember describing my daughter to the doctor as perfect, beautiful, and active. For the first time, I had an out-of-body experience—watching myself lying on that hospital bed, wailing and crying, asking over and over, “Is she going to be okay?”
But hope came in the form of a groundbreaking option: fetal surgery. Just two weeks before our deadline, we learned about a specialized surgery in Florida, repairing Spina Bifida before birth. After extensive testing—blood work, MRIs, amniocentesis—we learned that Ava and I qualified. At 26 weeks pregnant, we both underwent our first major surgery together.
On July 2nd, 2018—exactly five years after losing our first child—we arrived at Winnie Palmer Hospital in Orlando, Florida. Dr. Elbabaa, a world-renowned neurosurgeon, led a team of over ten doctors and nurses to repair Ava’s spine. As a first-time patient in a major surgery, I was terrified. I counted down from 100 as they placed me under anesthesia, my husband holding my hand, my mind a whirlwind of fear and hope. When I awoke, the pain was immense, but I clung to my daughter’s cross and the love surrounding me. Recovery was grueling—breathing treatments, oxygen, immobility, and exhaustion—but after five days, I was discharged, with strict instructions to stay close to the hospital.
Just two days later, my water broke. I remained hospitalized for another three weeks, enduring constant contractions, medication, and care from my mother and nurses. Finally, on August 1st, 2018, at 30 weeks and 2 days, Ava decided she was ready. We welcomed our miracle daughter at 8:06 a.m.—3 pounds, 5 ounces, 15 inches long, breathing on her own, wiggling her tiny toes. The child doctors had predicted might be paralyzed had full feeling from her waist down.
The NICU became our home for 87 days, a relentless rollercoaster of hope and fear. Ava fought through infections, procedures, and complications. At six weeks, a sudden Group B Strep infection left her fighting for her life. We sat by her side, praying and crying, fearing each moment could be her last. Yet, she pulled through, proving her resilience time and time again. She endured MRIs, cat scans, spinal taps, PICC lines, and countless medical procedures, all before even leaving the hospital on October 27th, 2018.
Life at home was an adjustment, filled with weekly therapies and long trips for appointments. Ava fell ill repeatedly but kept fighting. She underwent her second brain surgery in May 2019, an ETV/CPC for hydrocephalus, followed by a shunt placement in March 2020. Each surgery brought pain and recovery, but also incredible milestones—sitting up, starting to walk, and developing strength, courage, and independence. Therapy has been a blessing, helping her achieve each milestone at her own pace.
Fetal surgery is not a cure for Spina Bifida, and no two outcomes are the same. But for Ava, it changed her life—and ours—forever. Nearly 17 months old now, she continues to defy expectations. She is fearless, brave, strong, and motivated. She is our Twice-Born miracle, a living testament to hope, perseverance, and the power of love.
