taylor on patio

Nov 24, 2020 / Pediatric Developmental Disabilities

Share Your Story: Living Life to Her Fullest

Meet Taylor, a patient who is treated by our pediatric developmental disabilities experts.

Blog written by Taylor's mother, Anne, of Lewisville, TX.

My daughter's story began when I was 38 weeks pregnant. During my pregnancy, all of my routine sonograms were normal – until my last appointment. That last sonogram showed fluid in the baby’s brain and I was immediately sent to a perinatologist. I remember being so scared and cried the entire drive to the specialist's office. The perinatologist confirmed that there was some fluid in her brain and told me that I had to be admitted to the hospital and would deliver the baby the very next day. As soon as he asked me if he could pray for us, I immediately knew something was terribly wrong. 
Taylor was born on November 3, 2006. My doctor told me that she had a small opening in her back, but I just remember being concerned about her head. Nobody had mentioned anything about her back. Taylor ended up having two different surgeries – one to close the hole in the back and another to place a shunt in her head. She was diagnosed with hydrocephalus, the buildup of fluid in the ventricles within the brain and myelomeningocele, the most common form of spina bifida. Myelomeningocele occurs when skin, muscle and bone fail to close properly over the opening in the spinal column. At the time, we were devastated. 

Taylor was only a couple of months old when she had her first appointment at Scottish Rite. As new parents, we were desperately seeking more information about spina bifida and hydrocephalus. Dr. Adams gave us a wealth of information and answered all of our questions.  He was soft spoken; kind and patient and we will be forever grateful to his team for providing us with the answers that we were looking for.

When Taylor 1.5 years old, she had an instance where she was suddenly in a lot of pain and nobody could figure out what was wrong. It wasn't until we talked to Dr. Adams and he told us that her shunt could be causing the pain. He suggested we take her to the ER for a shunt tap. Doctors in the ER did not think the shunt was causing her pain, yet it was. Taylor ended up having an emergency shunt revision and her pain went away. We felt relieved, knowing Dr. Adams knew how to help Taylor, when others couldn’t.

When Taylor was 4 years old, she was able to attend Chance to Dance at Scottish Rite. This program gives kids the freedom to express themselves through dance, in a comfortable and safe setting. She participated in it for many years and absolutely loved it! Taylor's favorite Scottish Rite event is Camp TLC, which is held in conjunction with the Spina Bifida Association of North Texas (SBANT) and Camp John Marc. 

Over the years, Taylor’s care has transitioned to Dr. Meneses. Taylor looks forward to seeing Dr. Meneses and is always excited for those appointments. Doctors and nurses from the spina bifida clinic also organize and supervise the medical care at Camp TLC.  Taylor looks forward to this camp and has told us “one advantage of having spina bifida is that you get to go to camp and see Dr. Meneses while having fun!”  

Scottish Rite and our faith have given us a lot of hope. Because of this, Taylor has been able to accomplish many things in her 14 years. She has participated in camp, sitting volleyball, sled hockey, cheerleading and Girl Scouts. She has raised funds for the Spina Bifida Association of North Texas during their annual Walk-N-Roll and is currently working on a Girl Scout project to build a piece of equipment to help kids special needs gain upper body strength. She also just had the opportunity to create a special hamburger with Village Burger Bar, with part of the proceeds going back to Scottish Rite. 

Taylor's journey with Scottish Rite has always been positive, and they have been the backbone to her medical care. We are able to find answers to our questions and the follow-up care is outstanding. Because of their knowledge and expertise, our daughter is thriving and living life to her fullest potential.


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