When Amanda White found out she was pregnant, she was excited to welcome her second child into the world.
Then, 15 weeks into her pregnancy, she was diagnosed with pre-eclampsia. Soon her doctors realized her baby—a boy she named Ryder William Taylor—was not growing like he should.
At 20 weeks he was the size of a 16-week fetus. From there, complications grew.
“At 22 weeks the doctor gave me news that changed my life forever,” White said. “He told me that the placenta had detached and if I gave birth now the baby would not survive.”
White maintained her frail pregnancy another four weeks before Ryder’s condition again became critical.
At 26 weeks, 4 days, Ryder’s heart rate dropped and White was rushed into an emergency C-section.
“The entire time I was thinking, ‘My baby is not going to survive,’” White said.
But Ryder didn’t give up. He entered the world Nov. 20, 2018, weighing 1 pound, 9 ounces, and at one point dropped to 1 pound, 3 ounces. Ryder had to wait until reaching his one-month milestone before his mother could get close enough to kiss him.
Ryder has been fighting for his life since the day he arrived.
He has endured a life-threatening MRSA infection, coma, blood transfusions, colostomy and multiple surgeries. During one particularly dark period he stopped breathing and required six minutes of CPR.
Ryder has yet to see his home. For the past 15 months Golisano Children’s Hospital of Southwest Florida has been his safe place.
But Ryder must still take another big step in his healing journey – neurosurgery.
Ryder is one of thousands of children who have received treatment at Golisano—the only children’s hospital in Southwest Florida.
“Our mission remains keeping children close to home while they receive the expert care they require,” said Armando Llechu, chief administrative officer of Golisano Children’s Hospital. “Unfortunately, many children receiving world-class care at Golisano Children’s Hospital may still need to seek care away from home if a neurosurgeon is needed for their treatment plan.”
Because Golisano is still building a pediatric neurosurgery protocol, Ryder will have to travel to All Children’s Hospital in Tampa.
He will require a series of treatments for craniosynostosis (cranial deformity) throughout the next several years.
But If Llechu has his way, Ryder will find the treatment he needs at Golisano in the near future.
“By initiating the new pediatric neurosurgical services, we will provide access to a service currently not available and provide care close to home,” Llechu said.
Neurosurgery is the prevention, diagnosis, surgical treatment, and rehabilitation of disorders that affect any portion of the nervous system including the brain, spinal cord, peripheral nerves and cerebrovascular system.
“We need this service here,” Llechu said. “Offering this service will also allow for the development of specialty clinic services not offered locally or regionally and serves as a foundational building block for large pediatric programs in the future.
“In other words, not only will the service line assist with achieving access for a population in need, we will also be one major step closer to establishing a pediatric trauma center at Golisano Children’s Hospital.”
Golisano has already begun its investment, sending 23 team members to a two-day brain symposium for education and training, along with implementation of TeleNeurosurgery.
The service also requires intense training for all physicians and nurse practitioners in the pediatric ICU, the neonatal ICU, operating/surgical department, oncology unit and well as those team members in anesthesia and the emergency department.
“Our goal is to ensure outcomes are as good if not better than nationally established programs,” Llechu said. “We can continue to make a difference in the lives of families and children in our community; we have it in our power to address their individual needs in a meaningful way.”
However, pediatric neurosurgical services will ultimately depend on philanthropic support.
“We know this is asking so much from our community,” Llechu said. “The neurosurgery program is such an integral part of the hospital system.”
For Ryder, the future is still uncertain but looks brighter. There is no date when he will return to his home-away-from-home at Golisano, but the surgery will put him one step closer.
“I trust everyone here,” White said. “I cannot wait for all this to be over so I can just take my baby home and hold him in my arms. We’re going to keep on fighting.”
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