Jack

Fibular Hemimelia Connecticut Dr. Herzenberg

Jack, a patient treated by Dr. Herzenberg for fibular hemimelia, was featured in an issue of “Changing Lives through Philanthropy at LifeBridge Health.” Here is their interview of him reflecting on his 16-year treatment journey:

Q: What brought you to the Rubin Institute for Advanced Orthopedics (RIAO)?

A: The first time my parents visited the RIAO, Dr. Herzenberg and his team reassured them that my case was “business as usual” for them. They had seen and treated many, many kids with my diagnosis. My parents felt so comfortable knowing how experienced Dr. Herzenberg and his team were with lengthening and reconstruction in pediatric patients. I had my first lengthening when I was 2 years old!

Q: How did your parents find out about the RIAO?

A: After I was born and my parents received my diagnosis, they began researching treatment options for me. They kept hearing about the RIAO over and over, from my orthopedist in New York City, other parents of kids with Fibular Hemimelia, and internet searches. I was treated initially in New York City, and then my parents brought me to the RIAO when I was 6 months old.

Q: Were there a lot of changes for you and your family during your 16-years of treatment?

A: So many things changed for my family in the 16-years I was treated at the RIAO. Our family grew when we moved from Jersey City to a small town in Connecticut. There were many advances in how lengthening was handled at the RIAO during this time as well (no more pin care!).

Q: What was particularly trying during this 16-year period for you and your family?

A: Relearning how to walk over and over again after surgery and lengthening was particularly hard. Also, the emotional strain of traveling and multiple procedures.

Q: What was particularly special about the care you received?

A: The relationships that I have with Dr. Herzenberg and his team made my experience special. They never treated me as just a project, but always as a person. They never stopped helping me.

Q: What most excites you about the future?

A: I am excited about being able to function in a more “normal” way. I am looking forward to going to college next year to study drum set performance, something I would not have been able to do without my treatment.

While Dr. Herzenberg has retired from providing patient care, Dr. Philip McClure is available to treat this condition.