Emery’s Orthopedics Team Focuses on Giving Her a Future of Function

Valerie and her husband Brian were thrilled to learn they were about to become first-time parents. After struggling to get pregnant and many unsuccessful rounds of in vitro fertilization, the couple was excited for their 20-week ultrasound appointment.

After an anatomy scan and later genetic testing, Valerie and Brian learned that their unborn daughter Emery had Holt-Oram syndrome, a condition characterized by skeletal abnormalities of the hands and arms in addition to heart problems, effecting an estimated one in 100,000 people.

“I was in complete freak out mode,” said Valerie. “She wasn’t here yet, but we were already so in love with her. There was so much that was unknown, but Emery is our miracle baby and we were committed to finding the best care possible and doing everything in our power to take care of our child.”

Moments after Emery’s birth, doctors observed her underdeveloped hands. She was born without thumbs, and had a shortened radial bone in each forearm and wrists that turned in at a 90-degree angle. Emery was also born with two holes in her heart.

Before Emery’s first birthday, her parents made an appointment with a surgical team but left feeling uncomfortable with the surgeon’s medical plan. Wanting a second opinion, a friend recommend they reach out to Shriners Children’s Northern California.

Nationally Recognized Specialty Pediatric Orthopedic Care

Valerie called to request an appointment and was pleased to learn that the Shriners Children’s Northern California orthopedic department has a prestigious pediatric hand and upper extremity program. She also learned that the hospital is nationally recognized by U.S. News and World Report among the nation’s top 50 hospitals for orthopedics – ranking 22nd in orthopedics in partnership with UC Davis Children’s Hospital.

The hand and upper extremity program is comprised of some of the nation’s most sought-after pediatric hand surgeons who specialize in congenital and acquired hand conditions like Emery’s. The team includes surgeons and clinical researchers who have published hundreds of articles in peer-reviewed journals on congenital hand malformations and neuromuscular conditions, including brachial plexus birth injury and post-traumatic hand deformities.

Valerie, Brian and Emery met pediatric orthopedic hand surgeon Claire Manske, M.D., who assessed the function in Emery’s hands. Together, they discussed Emery’s functional activity goals and planned out surgical and therapeutic interventions that would maximize Emery’s hand function. Valerie and Brian were impressed with how Dr. Manske communicated their options and addressed all of their questions.

To date, Dr. Manske has performed two centralization surgeries on each of Emery's wrists to align them with her forearms and make them straight. Emery also had a procedure on her left hand that shortened and moved her index finger to position it to function like a thumb. This will soon be completed on her right hand as well.

“The end goal is to optimize Emery’s ability to use her hands and accomplish all the things she needs and wants to do,” said Dr. Manske. “Function and esthetic appearance are both important. We want all of our patients to feel comfortable and confident.”

“I cannot say enough good things about Dr. Manske,” said Valerie. “She is one of the nicest people I’ve ever met, and I knew right away that all of the staff [members] at Shriners Children’s would take care of Emery as if she was their own. I don’t know what we’d do without Shriners Children’s.”

Singing, Dancing and Being a Kid

Thanks to the specialty pediatric care Emery is receiving at Shriners Children’s Northern California, she is singing, dancing and enjoying pre-school like every other young girl her age. She continues to make progress and has additional surgeries planned in the future with Dr. Manske. Emery’s hand and upper extremity team will continue to support her and her family for many years to come.