Parent Blog: Amanda Byersdorfer
In their words
Story City, Iowa
Braden has been coming to University of Iowa Stead Family Children’s Hospital and seeing many specialists since the age of one (five years now) and has had a multitude of surgeries to treat many conditions caused by campomelic dysplasia, a rare form of dwarfism. He has had his cleft palate repaired, tubes placed in his ears, and, last summer, had a major spinal surgery where he underwent an anterior release of his spine, was placed in traction, and then had rods and screws placed in his back to correct his severe kyphosis and scoliosis (both involve curvature of the spine). Braden spent six weeks in the hospital due to his two surgeries and spent time on the Pediatric Intensive Care Unit (PICU) floor, as well as 2JCP.
Everyone—doctors, nurses, anesthesia team, hallway greeters, and the Child Life team—made Braden's stay comfortable, memorable, and as fun as it could be considering the circumstances. Every one of his doctors and nurses treated him as if he were their own child, and we never once had to question or worry about the care he was receiving. The Child Life specialists especially made it a fun experience for him and his two brothers by hosting craft time and play time, and by bringing toys, books, and videos to help Braden pass the time while he was cooped up in the hospital.
Our family will forever be grateful for the care and love that was shown to not only Braden, but also to his entire family. For Braden and his twin brother's sixth birthdays, they wanted to give back to the hospital for all that everyone did for our family. In lieu of birthday gifts, the boys asked everyone to bring in donations for UI Stead Family Children’s Hospital to brighten the day of other children who are spending time there.
When Braden was first born, we were given a very grim outlook for his quality of life, as well as his lifespan. Once we started coming to UI Stead Family Children’s Hospital, our hope and spirits were lifted as each doctor and nurse has gone out of their way to find the best care that would meet all of Braden's needs. Not only have they taken the time to listen to our concerns, they also take into consideration our thoughts and feelings regarding his care since we are with him 24/7 and know him and his abilities best.
Many doctors refused to treat Braden's scoliosis because they had never seen another patient with his condition. Dr. Weinstein listened to our concerns and contacted another surgeon out on the east coast who had seen other patients similar to Braden and developed a plan with that doctor in order to give Braden the best possible outcome with the least amount of risks. Dr. Weinstein also came in on his days off to check on Braden when he had his surgery and was always available if we had questions or concerns.
In fact, after we were released, he gave us his home phone number, as well as immediately emailed us back numerous times when we had questions regarding Braden’s surgical site. Dr. Mueller, who has been the head of Braden's anesthesia team for all of his surgeries, has called us after we have been released just to check on Braden.
The anesthesia team sees many patients on a daily basis, so we were amazed when we ran into Dr. Mueller three weeks after Braden's surgery in the hallway, and he stopped, called us by our names, and asked how Braden was doing. Talk about amazing!
Many of the doctors at UI Stead Family Children’s Hospital make themselves available to their patients outside of work hours, showing the level of care and love they have for their jobs, as well as their patients. I would (and have) recommended parents with children who have complex medical issues seek treatment or counsel with the team of doctors at University of Iowa Stead Family Children’s Hospital. My family will forever be grateful for the care and love that has been shown to our son!