Charles Wilder Benton was born on January 2nd 2018, at a healthy weight of 9lbs 7oz. Before he was born doctors noticed abnormalities on his ultrasound. At the time of birth doctors seemed certain that Wilder had a rare syndrome named Klippel-Trenaunay syndrome or KT syndrome. Aside from the diagnosis of KT syndrome Wilder was healthy and doctors felt that he was able to go home. Wilder left the hospital and headed to the Benton household in Lawrence, KS on January 5th. On Saturday January 13th his father, Bryce, rushed Wilder to the hospital as he was fussy and inconsolable for several hours. The night began with a stop at Lawrence Memorial Hospital, then to Overland Park Regional Hospital where Wilder was born, then within 24 hours he was transferred to Children Mercy Hospital's NICU.
Once Wilder arrived at Children's Mercy the team worked quickly to investigate his discomfort and it ultimately was sepsis that was the root of his fussiness. He was immediately started on aggressive antibiotics and intubated due to his rapid decline. Other supportive therapies and transfusions of red blood cells, plasma and platelets have aided in his stabilization and mild improvement. A component of this syndrome that Wilder presents with is the formation of cysts internally and within his skin layers. A large external cyst currently covers the majority of his left torso and due to his sepsis has retained fluid and is being monitored carefully.
Due to the severity of his sepsis and very rare syndrome Wilder will remain hospitalized to receive close monitoring and aggressive antibiotic therapy until at least February 5th. Once the sepsis has resolved multiple treatments and surgeries will be a part of his early childhood due to this syndrome. Doctors at Children's Mercy are now questioning the diagnosis of KT syndrome and they will be completing a biopsy for genetic review once the sepsis has resolved.
Wilder has a long road ahead of him. Friends and family came together and decided that this would be a great way to support them throughout this tough time. If a financial contribution is not possible, your thoughts and prayers are appreciated just as much.
- Betty Kane
- Brooke Karmin
- Danielle M Newsome
- Andrew Maslan
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