The Turcios family first came to CHoR before their baby girl was even born so they could begin preparing for the journey that awaited them. Now 5 years old (she’s had a birthday since her photo was taken), Sarah comes regularly for appointments and is thriving with the help of her dedicated mom and CHoR team.
“They told me when I was pregnant that she had spina bifida and hydrocephalus,” said Sarah’s mom, Lidice. “When I was about seven months pregnant, they had me take a look around the NICU because she would go there after birth.”
Spina bifida occurs when the neural tube along the spine doesn’t close completely in utero. Many babies born with spina bifida also get hydrocephalus, or extra fluid in and around the brain, which needs to be treated properly to prevent brain injury. For Sarah, this meant having surgery when she was first born for placement of a ventricularperitoneal shunt to drain the extra fluid and reduce pressure on the brain.
“I’ve known Sarah since she was in our NICU. She has developed into such a sweet and confident girl,” said Michele Ellett, nurse practitioner on our neurosurgery team. “We will follow Sarah into adulthood to evaluate for any hydrocephalus/shunt concerns or concerns with her spinal cord as she grows up.”
In addition to Michele and neurosurgeon Dr. Gary Tye, Sarah has a whole host of specialists on her team at CHoR. Dr. Tiffany Kimbrough is at the hub as her general pediatrician, tracking her overall health and coordinating care with her other providers. She also receives care from our gastroenterology, orthopaedics, physical medicine and rehabilitation, pulmonary medicine and urology teams.
Heather Agnew, gastroenterology nurse practitioner, loves the days she gets to see Sarah in clinic.
“Sarah always has a shy but mischievous smile and is not encumbered by her limitations but pushes past them to continue to be a vibrant and playful little girl,” said Heather. “I’ve been following her since she was about a year old for feeding issues, nutrition concerns, reflux and the elimination challenges that go along with her spinal abnormalities. Despite her complex medical needs, she has thrived and continues to be an excellent example of not allowing her disabilities to define her.”
The CHoR team member who sees her most frequently is her physical therapist, Andrea Lester, for weekly appointments to address weakness in her legs, decreased sensation in her feet and a club foot related to her spina bifida. Andrea is focused on strengthening Sarah’s legs, improving her walking and preventing pain and skin breakdown today, but also setting her up for success in the future.
“I work with her orthopaedic doctor, orthotics team and other practitioners to determine the best bracing for her legs so that when she is much older, she’ll have a quality gait pattern and good joint position,” Andrea said. “We work to help her gain skills such as stair climbing without help, running, jumping and keeping up with her peers. Our biggest priority is to help Sarah reach her highest potential while maintaining good positioning so that later in life she won’t have pain. We want her to have fun and get to do the things she wants to do.”
Andrea isn’t the only one who has the pleasure of seeing Sarah and her mom at these regular appointments.
“She smiles, waves and speaks to the technicians, the front office team and several of the therapists when she’s in the clinic. Everyone loves Sarah,” added Andrea.
Everyone agrees that the most important person on the team – other than Sarah herself – is her mom.
“Through all her medical challenges Sarah has done well because she has an amazing mother who advocates for her, asks questions to her medical team and most importantly allows Sarah to have fun and be a kid,” said Michele.
For now, having fun for Sarah includes playing, coloring, doing puzzles and learning in virtual school. With her work ethic and support though, the sky is the limit in the years ahead.
){kind=link}
){kind=link}
){kind=link}