Parent Blog: Pam Stallings
In their words
It was a very serious and life-threatening condition. Our neurosurgery team here in Louisville advised us to find a specialist who had experience treating abnormalities of the cranial cervical junction and who would have the foremost expertise on Chiari malformation and secondary connective tissue disorders.
As parents, we were determined to put our child’s life in the hands of the doctor and medical team with the most experience and understanding of complex pediatric neurosurgery cases. Location was never a factor.
After doing a lot of research, we met with pediatric neurosurgeon Arnold Menezes, MD, at University of Iowa Stead Family Children’s Hospital.
From our first meeting with Dr. Menezes, we knew we would not need to look further. He was the first medical professional to teach us that underlying conditions can manifest into serious problems like what Samantha was facing. Thanks to the experience and wisdom of the medical geneticist, follow-up tests showed that Samantha had an underlying condition that had been undiagnosed.
Our experience at University of Iowa Stead Family Children’s Hospital was truly lifesaving. Without Dr. Menezes and the entire care team—pediatric specialists in Continuity of Care, Critical Care, Genetics, Neurology, Neurosurgery, Ophthalmology, Otolaryngology, Radiology, and Surgery—our daughter would not be here today and would never have the opportunity to save others and grow into a successful young adult with a bright future in front of her. Our family is also grateful to Mary Jo Piper and Judy Welch, who were both so helpful with adjusting to a new setting. Their friendship will last a lifetime.
In fact, everyone involved in Samantha’s care and our family’s experience—doctors, nurses, office staff, X-ray and MRI technicians, other families who gave us support throughout this journey, and everyone at the Ronald McDonald House who took care of us on our extended stays—helped us to “stay with it” and find the real answers, and hope, behind a rare diagnosis and condition. Without them, our daughter would never have had the opportunity to be happy and healthy and ready to embark on a career in sports journalism.
Samantha continues to travel to Iowa for follow-up care, and she also receives treatment at Johns Hopkins with our team in Louisville. We are very lucky to have a group that is on top of our needs and works together for the care and attention of the patient.
This fall will mark 10 years since Samantha’s Chiari malformation surgery. She has helped lead other patients and families to Iowa, and we share her story whenever Dr. Menezes has patients who wish to talk to someone about their journey. We are glad to do this because Samantha would not be here without our University of Iowa “family.”