Izahd’s Story: Hand Surgery for Brachial Plexus
Published on
Izahd’s family was consistently impressed by the care their son received at Children’s Hospital of Philadelphia. From his skilled surgical team and comprehensive follow-up care to the dedicated nurse navigator who supported them every step of the way, each stage in their journey inspired them to give back. The result: A gift in support of brachial plexus research to make sure more families could share their positive experience.
When Izahduddin (Izahd) was born in October 2017, his parents could tell right away that there was something wrong with his arm. Izahd had an injury to the brachial plexus, a network of intertwined nerves that control movement and sensation in the arm and hand. His right arm was paralyzed.
At 7 days old, Izahd started intense physical therapy to keep his muscles strong — and his parents began searching for a treatment plan for their son. Izahd’s father, Azeemuddin Ahmed, MD, MBA, is clinical professor and Executive Vice Chair of the Department of Emergency Medicine at the University of Iowa Carver College of Medicine. Dr. Ahmed had a promising starting point for a treatment plan for his son: Apurva Shah, MD, MBA, a nationally recognized expert in pediatric hand and upper-extremity surgery who practices at Children’s Hospital of Philadelphia (CHOP).
“Dr. Shah and I were on the faculty together at the University of Iowa before he went to CHOP,” says Dr. Ahmed. “I knew of him, but we didn’t overlap much because we have very different specialties. When Izahd’s condition was diagnosed, I needed to take him to a center with experience in dealing with this injury. I learned more about Dr. Shah’s reputation and skill set from people who knew him well when he was here. The decision to go to CHOP was a no-brainer. As a physician, I know CHOP’s reputation in the medical world.”
Helping families navigate the hospital experience
Maribeth Magarity, RN, Nurse Navigator in CHOP’s Division of Orthopaedics, helped the Ahmed family schedule an appointment with Dr. Shah and gather medical records and imaging. She also coordinated their housing and transportation to and from the hospital. In February 2018, Dr. Shah performed a six-hour surgery to bypass Izahd’s damaged nerves. As a result, Izahd has regained some function in his arm.
Second Opinions
For the past two years, the family has made trips to Philadelphia every few months for specialized follow-up care with Dr. Shah. Izahd also has physical and occupational therapy in Iowa between visits with Dr. Shah. Maribeth continues to support the family to make their travels to Philadelphia as seamless as possible, and coordinates care between Izahd’s multidisciplinary care team in Iowa and Philadelphia.
A personal motivation to give back
In May 2018, Dr. Ahmed donated $25 to CHOP’s Children’s Fund. Two months later, he emailed the hospital’s Foundation to ask about endowments to CHOP, expressing an interest in orthopaedic surgery. The Ahmeds’ journey from patient family to donor was very personal.
“As parents, we met several other families at CHOP — we learned of other people’s situations, and we identified with them and all the emotions that go along with having a child who suffers this injury,” explains Dr. Ahmed. “We really developed a connection to the families and to CHOP. My wife and I thought, ‘How can we help these other families and help CHOP advance brachial plexus care?’”
The Ahmeds are deeply familiar with the work of an institution like CHOP.
“I’m an academic physician, and my wife has worked as a social worker in an academic medical center, so we understand the mission of academic medical centers and the importance of research,” says Dr. Ahmed. “Brachial plexus injuries are not a visible area where there’s a lot of funding. It’s relatively unknown. My wife and I talked extensively, and we felt donating was consistent with our belief in academic medicine and advancing research and care of these injuries.”
For the Ahmeds to make the gift a reality, a wonderful thing happened: Dr. Ahmed’s brother, his brother’s wife and his parents joined his family to establish a $100,000 endowment supporting brachial plexus research at CHOP.
“We couldn’t have done it without them,” Dr. Ahmed says of his family members. “Their support was tremendous.”
The Izahduddin Ahmed Endowed Fund for Brachial Plexus Research will generate funding for the research program in perpetuity. And the family is committed to building the endowment and raising more funds, with a goal of reaching another $100,000.
Dr. Ahmed describes his son, now 2, as “a very resilient child, because he’s endured so much. He’s very social, and he’s a tough kid.” Regardless of how much strength and mobility Izahd gains in his arm and how he adapts to daily living, “He has very few limitations,” says his father.
