Care Is a Family Affair at Shriners Children’s New England

When Dan and Julie walked through the doors of Shriners Children’s New England for an appointment with their son, Daniel, it was a full-circle moment 25 years in the making.

Not only did they both receive care there, but it’s also where they had their first date.

Dan and Julie met as teenagers when they attended the Harvest Ball at Shriners Children’s New England in the fall of 1996. At that time, regular social events were held for patients of all ages. Dan and Julie spent most of the evening together and realized they only lived a short distance from one another. The smitten teens connected via telephone over the next few days and soon began dating.

Julie became a patient at Shriners Children’s New England after being diagnosed with scoliosis when she was 12 years old. Julie’s younger brother had been treated there for clubfoot since infancy, and her family felt reassured knowing she would receive the same level of personalized care. She attended the scoliosis clinic and was treated with bracing, significantly improving the curve in her spine over several years. Dan was a patient for a shorter time after he was diagnosed with a weak muscle condition in his shoulders. He was fitted for a brace and underwent physical therapy, which successfully resolved his symptoms.

The next time Dan and Julie attended the Harvest Ball, they went as a couple. By the time they married and had two sons, the story of how they met was a well-known and frequently told tale among family and friends. Dan and Julie kept ties to Shriners Children’s New England, bringing their sons to a fundraising walk there. “It was great to go back and participate in the walk,” said Dan. “If it wasn’t for Shriners Children’s, we wouldn’t have our family. We were happy to give back.”

When their oldest son, Daniel, began experiencing back pain at the age of 12, it was recommended that he see a provider specializing in spine conditions. Luckily, Dan and Julie knew exactly where to turn. Entering Shriners Children’s New England, now as parents, felt familiar and comforting. “I remembered the exam rooms and the X-ray department well,” said Julie. “Since I had been treated for scoliosis, I could tell Daniel what to expect and wear to his appointment.”

Daniel was diagnosed with kyphosis, a forward rounding of the back. This differs from scoliosis, which causes a sideways spinal curve. Daniel’s care team, including Adam Iwanski, PA-C, continued to monitor his condition as he grew. When he developed leg pain and had difficulty running, it was discovered that he had a leg length discrepancy and malrotation of the lower extremities. As Daniel’s pain became worse, it prevented him from doing the things he enjoyed, especially rock climbing. A junior firefighter and scout troop member, he is an active teen who loves the outdoors.

Daniel and his parents began to discuss the option of surgery with Adam and Lael Luedtke, M.D., orthopedic surgeon and medical director at Shriners Children’s New England. With her child now a patient, Julie had a new appreciation for what her parents experienced. “It was overwhelming being in the parent’s shoes. I didn’t know what my own parents went through until we went through it with Daniel,” she said.

As Dan and Julie helped Daniel weigh the pros and cons of surgery, they were grateful for his care team’s patient-centered approach. “The whole team was great at making sure he was included, and the information was directed at him,” said Dan. That summer, Dr. Luedtke performed femoral and tibial de-rotation osteotomies with tibial shortening on Daniel’s left leg to improve his overall alignment and function.

Dan’s training as a paramedic in the local medical community helped to prepare him for what his son’s surgery and recovery would be like. Julie’s dad was also a source of support for them after navigating many years of care for Julie and her brother. “The ties with my work to healthcare, and our family’s history with Shriners Children’s, gave us a large support system,” said Dan. “We had the utmost trust and confidence in our care team, knowing Daniel was in the best hands.”

With his post-operative physical therapy complete, Daniel, now 15, is preparing for surgery on his right leg. The comprehensive treatment he has received is one of many reasons Dan and Julie are grateful for Shriners Children’s New England. “We all have more knowledge going into this surgery, and it is comforting knowing how well he has been taken care of,” said Dan. “Our experience has always given us confidence that he is in the right place.”