Looking back, it’s surreal how much your life can change over the course of a year. In August of 2012, my husband and I found out that we were expecting our first child. Elated, we shared the news with our friends and family. We expected nothing more than a normal pregnancy, a time of joy, excitement and special moments spent together before our family of 2 became a family of 3.
For the first 4 months, I couldn’t have asked for an easier pregnancy. At 18 weeks pregnant, on November 14, 2012, my husband and I went in for an ultrasound that would tell us the gender of our baby. The appointment continued without a hitch and we left the hospital excited and finally starting to feel like parents.
On November 15, 2012, as I was preparing to teach a class full of eager 2-year-olds, I received a call from my doctor’s office. The nurse was vague and only said that the doctor needed to see me, and it could not wait until my scheduled appointment a day later. As I hung up the phone I felt the walls closing in, threatening my unborn child and me.
My husband is a firefighter for the city, and I wasn’t able to get a hold of him. The only other thing I knew to do was call my mom. In a few short minutes, she was in the car making the hour and a half trip to go to the doctor with me. When we finally walked into the doctor’s office, I heard the words that would change the course of my pregnancy, and our life as a family forever — our baby had spina bifida. My physician mentioned that, due to the diagnosis, she was referring me to Texas Children’s Hospital in Houston. The rest of the time spent at the doctor’s office was a blur, I had questions but I couldn’t seem to form them. All I could think about were the hurdles that my sweet child was already having to conquer before she was even born.
I was able to meet my husband at work and tell him the news that I still couldn’t wrap my head around. We cried together, prayed together, and leaned on each other and our families to get us through the next days, weeks and months.
My first appointment at Texas Children’s Hospital was on November 21, 2012. They performed another ultrasound and an MRI that confirmed our baby girl had a form of spina bifida called myelomeningocele. Her spine and spinal cord did not form properly, and she had an open lesion beginning at the fifth lumbar vertebrae. I met with Dr. Rodrigo Ruano that same day and he gave me some insight to the road ahead. He told me that they currently had performed 5 fetal surgeries to close the neural tube defect that my baby girl currently suffered from. The physicians were hopeful that the fetal surgery would decrease the risk of hydrocephalus, increase fluid on the brain, and increase the likelihood that one day our child would be able to walk unassisted. I was told that the surgery was a very risky for my baby and I, and even then it wasn’t a “slam dunk”, nothing was a guarantee. After much thought and prayer my husband and I decided that, if we were approved, the fetal surgery was what we were going to do. As parents, years down the road, no matter what situation we faced after she was born, we needed to be able to tell our daughter that we did everything in our power to give her the best shot at a normal life.
On December 13, 2012, at 22 weeks pregnant, my baby and I were in the hands of a team of skilled surgeons; surgeons who made us feel at ease, surgeons that we trusted whole-heartedly. After being in the operating room for 5 hours, it was over. The surgery was behind us, and in our book, it was a success!
For the next 13 weeks, I was on bed rest at my parents’ house in Houston, 90 miles away from my home and my life with my husband. I made weekly trips to the Fetal Center for various check-ups so that the physicians could monitor my baby girl and I very closely.
During the first 12 weeks following surgery, everything went according to plan, and it looked as if I would make it to my 37 week delivery date. On March 11, 2013, I went in for my weekly tests. Dr. Ruano and Dr. Alireza Shamshirsaz noticed something on the ultrasound that wasn’t there before — there were hair-like membranes floating in the amniotic sac. The next day I was admitted to Texas Children’s Pavilion for Women for back and abdominal pain. When Dr. Shamshirsaz came in the next morning he told me that, in order to avoid unneeded risk, they were going to deliver our daughter that next day.
On March 14, 2013 at 9:59 a.m., we were blessed with the most beautiful baby girl. The first moment I saw her, I confirmed that everything we had been through was worth it. She was worth every sacrifice and every hurdle. During the cesarean section, the surgeons realized that the membranes they saw on the ultrasound were caused from something called placental abruption. The linings of the placenta had begun separating from themselves, causing me to bleed internally. If we had not been blessed with such skilled and attentive surgeons at the Fetal Center, the outcome could have been fatal.
We were blessed to have our daughter, Berkley, at the time we did so that this cutting edge surgery was an option for us. The doctors and nurses at Texas Children’s Hospital in the Fetal Center and at the Pavilion for Women were the biggest blessing of all. They were our saving grace during the scariest time of our lives. They educated us, made us laugh and comforted us when we didn’t know where to turn.
Berkley is now 6 weeks old. As of now, Berkley doesn’t have any of the complications that normally accompany spina bifida. She currently does not have hydrocephalus and doesn’t show any weakness in her lower extremities. Berkley will continue to have follow-up appointments with the Spina Bifida Clinic at Texas Children’s Hospital. We know that whatever lies ahead for us, we have an amazing support system and great doctors to guide us through. Each time she kicks her legs and wiggles her toes; it is a constant reminder of how blessed we have been.
Texas Children’s Hospital gave us peace in the storm and hope for tomorrow. Berkley is not defined by spina bifida; she continues to break the mold every day. This opportunity has truly changed our lives and the life of our daughter forever, and for that, we are forever grateful.
We would like to personally thank Dr. Ruano, Dr. Shamshirsaz, Dr. Cass, Dr. Olutoye, Dr. Bollo and Angel for their honesty, support, compassion and the much-needed comedic relief since receiving Berkley’s diagnosis.
You can learn about Texas Children’s Fetal Center, here.