13-year-old Sam has been a patient at Nemours Children’s Health for much of his life. Born with a rare, unbalanced translocation, a chromosomal condition that affects many parts of the body, he lives with global developmental delays and several chronic health concerns.
Throughout his life, Sam and his family have worked closely with a wide range of Nemours Children’s specialists. “We have been seeing Nemours specialists since Sam was itty bitty,” shares his mother, Audrey. “Over the years, he has been under the care of orthopedics, audiology, cardiology, pulmonology, surgical services, the gastrointestinal department, nutritionists, and neurology. We have seen quite a lot of the hospital and a lot of the doctors over the years.”
Among the many medical challenges Sam faced was scoliosis, a condition in which the vertebrae form a curved line instead of being straight. “Sam was born with a group of congenital birth defects including some fused ribs and other skeletal abnormalities,” shares Audrey. “When he was quite young, the Nemours team began noticing some curvature in his spine. Because Sam has low muscle tone and other conditions that would exacerbate the situation, we were advised that this would only worsen over time. Initially, we tried bracing, but it was not effective. At around 6 or 7 years old, Sam had a MAGEC™ rod placement, which did a good job of maintaining curve correction without the need for frequent surgeries.”
However, as he outgrew the MAGEC™ rods, Sam’s curve began to worsen again. This led to the decision for spinal fusion surgery. “As Sam grew, the curve in his spine began to worsen more dramatically. At that point, we realized that the condition would only get worse, and the next step was to perform a spinal fusion surgery. This involved removing the MAGEC™ rods and placing new implants to achieve the spinal fusion.”
When Sam’s orthopedic care team, led by Dr. Suken Shah, recommended spinal fusion surgery, they introduced the family to the VELYS™ Active Robotic Assistance. Nemours Children’s Hospital, Delaware recently became the first on the East Coast to adopt this innovative technology, designed to enhance surgical precision and improve outcomes for spinal procedures. “We feel very excited to be part of new options for more precise procedures and to have better tools available at the hospital,” shares Audrey. “These tools are able to plot and determine the best course of action, setting Sam up for a more successful long-term recovery. It’s incredible to be part of launching new advancements, and we are truly fortunate that Nemours is paying attention to the latest tools and best practices to support their patients. As a patient family, we feel grateful that Nemours is always discerning about the best practices and the latest technologies and takes such excellent care of their patients.”
“The team walked us through everything,” says Audrey. “They are incredibly knowledgeable and very patient. They have a genuine desire to support and help you be as prepared as possible when you go through the procedure. They provided thorough documents outlining what to expect each day post-op. This was very helpful in painting a clear picture of our journey and what to expect along the way. Of course, there might be hiccups, but that level of preparation is invaluable for a family who is not the expert. We have to put a lot of trust in the medical team, and Nemours’ preparedness and support significantly reduce the stress of undergoing such a large intervention.”
Following the procedure, Sam’s recovery has been remarkable. “It feels truly astounding to see Sam’s progress,” says Audrey. “Now 3 weeks post-op, his range of motion is largely back to baseline, and it is wonderful to not have to use any bracing on the other side of the surgery. The Nemours team had him up and moving the day after surgery, and by day two or three, he was walking around. Their recovery plan and support have been excellent.”
Moving forward, Sam will continue to have regular follow-ups and X-rays with his Nemours care team to monitor his spinal curve as he grows. To parents considering spinal fusion or navigating complex medical decisions, Audrey shares, “I would advise other families to bring up any questions or concerns they have. We knew a lot of what to expect based on the preparation by the Nemours team, and the kind of conversations that they initiated. I think they were answering questions we didn’t even know to ask, which feels really good. Share any worries of fears that you have, the Nemours team will help guide you through them.” For Sam and his family, Nemours has become a trusted partner in their care journey. “We are so thankful for Dr. Shah and the entire orthopedics team,” says Audrey. “He has surrounded himself with so many dedicated and skilled professionals who support families in countless ways. They are often the unsung heroes, ensuring that such a major surgery goes as smoothly as possible. We are deeply grateful for everyone on the team, for Dr. Shah’s advocacy and vision, and for the way the team members join hands to take such excellent care of us as a family.”
