Life has a funny way of throwing curveballs just when you think you have everything under control. I had meticulously planned the next decade of my life. I had landed my dream job in aerospace engineering, a loving family, and was excited about the arrival of my second child, having already been blessed with a wonderful three-year-old daughter. But everything changed at 20 weeks into my pregnancy when I received the heartbreaking news that my second daughter would be born with severe spina bifida. Thus began a journey filled with confusion and fear, but also love, hope, and countless blessings.
On July 10, we celebrated my daughter’s first birthday, which felt like her second. She is among a rare group of children who can proudly say they are “twice born.” The first “birth” occurred when I was just 25 weeks pregnant; she became the first baby in the Southeast to undergo fetal surgery. In a groundbreaking procedure, doctors temporarily removed my uterus to operate on her tiny 1.5-pound body, closing the opening in her back and preventing further damage to her exposed nerves.
Her second “birth” took place at 32 weeks when my daughter, whom we named Lucy, decided to arrive much earlier than anticipated, weighing 4 pounds and 10 ounces. She entered the world with all the vigor of a healthy baby, kicking and screaming. While in-utero surgery is not a panacea for spina bifida and does not suit every case, we believed it was a necessary step to enhance our daughter’s chances for a fulfilling life. Our hope is that sharing our story will illuminate a path for others facing similar uncertainties.
Part 1: The Appointment
Lucy Victoria made her first brief appearance in the third week of May. Unlike typical newborns, she remained in her mother’s womb, with only a small part of her lower back exposed. This short introduction lasted around 45 minutes, during which an operating room buzzed with some of the top pediatric specialists in the United States. The event was so significant it was broadcasted live for those not directly involved to witness.
Weeks earlier, this moment seemed impossible. I, alongside my partner Jason, was eagerly anticipating the arrival of our second child, with a due date of September 4th—months away. Our routine anatomy scan on April 20, 2018, was expected to reveal the baby’s sex. Instead, it turned our world upside down.
The appointment started like any other, but when the usually chatty ultrasound technician fell silent, our hearts sank. She inquired about our genetic screening, to which I replied that everything had come back normal.
“I’m going to be honest,” she said, her tone serious. “The baby’s feet and spine look unusual, and there’s something concerning about the head. I can’t determine what it is, but something is definitely wrong. I’ll send the images to the doctor.”
Her honesty, while appreciated, sent us spiraling into a frenzy of questions. What could possibly be wrong? I found myself reflecting on every choice I made during my pregnancy, wondering if I had done something to cause this.
The doctor’s follow-up, though somewhat reassuring, didn’t provide clarity. After reviewing the ultrasound, she informed us, “I don’t know what’s wrong. You’ll be referred to a specialist. But rest assured, you didn’t do anything wrong.” We left the appointment, having lost sight of our original goal of learning the baby’s sex.
The agonizing wait for the upcoming appointment felt like an eternity. Without a diagnosis, Jason and I held our breath, praying for our unborn child’s well-being. He imagined the worst-case scenarios, fearing brain damage and the burden it might place on our older daughter, Emma.
On the day of the specialist appointment, Jason, my mother Laura, and I went as a united front. While Laura waited anxiously in the waiting room, the ultrasound technician provided updates, even revealing that we were expecting another girl.
“She acted as if everything was normal,” I later recounted, “but I had my eyes closed, still in panic mode.” When the doctor arrived, he confirmed that our baby had spina bifida, explaining the implications and the need for potential surgery. The medical jargon overwhelmed us, but amidst it all, we felt a glimmer of hope.
Part 2: The Community
The next day, I took a day off work to educate myself about Lucy’s diagnosis. I stumbled upon the Spina Bifida Association of Central Florida and sought to understand the daily realities of living with the condition. While some information provided encouragement, a deeper dive into the web revealed distressing images and statistics that left me feeling devastated.
In a moment of vulnerability, I called my mother, Laura, who helped me regain my composure and redirected my research toward official support groups. I joined the Spina Bifida Association of Orlando’s Facebook group, where I saw joyful pictures of thriving children. I reached out to parents, sharing my diagnosis and seeking their stories of hope.
A few parents responded, sharing their journeys filled with challenges and triumphs. One parent even offered her phone number, sharing valuable advice on specialists and resources. “There’s a doctor from St. Louis who is performing surgeries at the Spina Bifida Clinic. Tell them I sent you,” she advised.
After our conversation, I eagerly shared this newfound information with Jason. I made calls and left messages. By that evening, I received a call back from Diane, a nurse at the Center for Maternal Fetal Medicine. An appointment was scheduled for the following week to meet the entire surgical team.
Part 3: The Surgery
Our focus shifted to the MOMS (Management of Myelomeningocele Study) Trial, which compared two treatment approaches for spina bifida—prenatal versus postnatal surgery. The prospect of prenatal surgery seemed promising, potentially improving Lucy’s long-term health. After thorough discussions and prayers, we decided to proceed with the prenatal procedure, with surgery set for Wednesday, May 23rd—less than a month after the initial diagnosis.
On the day of the surgery, we arrived at the hospital by 4 a.m. for preparations. I had spent the previous week undergoing tests and meeting with the hospital staff. Despite the early hour, excitement filled the air. During the four-hour surgery, my uterus would be carefully opened to expose Lucy’s lower back, where the neurosurgeon would repair the spinal defect.
As I was wheeled into the operating room, I joked with the nurses, “I guess it’s nap time,” feeling a mixture of nervousness and excitement.
Part 4: Lucy’s Arrival
Post-surgery was a tense waiting game. Even though the defect in Lucy’s spine was repaired, doctors needed to conduct regular ultrasounds to monitor her brain and movement before and after her birth. To maintain a sense of normalcy for Emma, I stayed with my parents during my recovery, while Jason focused on his work and our daughter. Unfortunately, complications from medication led to a drop in my blood pressure, requiring another hospital visit.
Just two days after being released, my water broke, and I found myself back in the hospital at 27 weeks pregnant, far earlier than anticipated.
Throughout this journey, we have learned about resilience, community support, and the power of hope. If you find yourself facing uncertainties in your journey to parenthood, remember that you are not alone. For more information on home insemination, check out this resource. And if you’re curious about artificial insemination, visit this authoritative source on the subject. Additionally, for insights into pregnancy success rates, you can refer to this excellent resource on IUI success.
In summary, our journey with Lucy has been filled with unexpected challenges but also immense love and support. From the initial diagnosis to her surgeries, we have been blessed with a community that uplifts us and a daughter who inspires us every day.