Jackson R.

Fibular Hemimelia Pennsylvania
Dr. Herzenberg, Dr. McClure

Jackson was born with fibular hemimelia, but he hasn’t let that stop him for one second! Now seven years old, Jackson loves playing baseball. His mom Christine shares, “He is hitting the ball and running around the bases as well or even better than his same-aged peers. His physical education teacher is amazed at how he meets every challenge he is given.  He is now in first grade and is starting to understand his limb length difference more, but he does not let this knowledge impact his determination to do everything he sets out to do. He simply says, ‘Watch this!’ Our motto is: ‘No fibula, no problem!’”

Christine shares that their first concern upon learning Jackson had fibular hemimelia was if he would ever walk. “As evidenced by these photos, he is not just walking, he is running!” Their second worry was how to decide between limb lengthening and reconstruction versus amputation. She shares, “From our very first visit, our team of doctors, first Dr. Herzenberg, and then Dr. McClure, have been patient with us at each visit. Listening to our many questions and concerns, going over surgery plans one more time, taking time to talk to Jackson and teach him about different stages of his treatment, including his external fixator… We could not ask for better doctors…. Due to this, we have been able to move confidently forward with Jackson’s treatment of reconstruction and limb lengthening.

Their third concern was how to afford treatment in another state. Christine shares, “The Rubin Institute has really thought about my son as a whole individual throughout this process. Part of that entails hiring persons who help coordinate areas of his life applying to more than just medical care, but also social and emotional care. We have been given the opportunity to work with [Pediatric Liaison] Ms. Marilyn Richardson, who has been able to help with referrals for housing for each of our stays, whether they were for a few days or for a few months. The places we have been referred to have both been affordable options. She has also been there to comfort and provide support to both Jackson and me during office visits and especially on surgery days.”

“Our doctors have worked with us on dates that they have offered to complete the surgeries. The timing of when the surgeries have occurred has helped lower the costs of traveling and the overall out of pocket expenses involved. It also impacted the need for childcare as we had two older school-aged children when Jackson’s treatment began. It has especially been helpful, since we are out of state, to know that the doctors who are completing Jackson’s surgery are the ones emailing back and forth with you when you have questions or just want to share progress updates. To summarize, our life has improved because of being treated at the Rubin Institute, because our major concerns have lessened or have been alleviated completely due to the care Jackson has received not only as a patient, but as a person.”

Christine shares, “I spent hours each night researching about fibular hemimelia and the different types and outcomes that were published in stories much like this one I’m writing for Jackson. I was losing sleep and very emotionally impacted by his diagnosis. Neither my husband nor I have ever met anyone with a limb length difference. I say this all to talk about the best advice a mother in this state could have ever received from a surgeon. It wasn’t some scientific reason why one treatment option was better than the other. It wasn’t that Jackson’s case was one that would not need intervention at all; his case is actually quite complex. Dr. Herzenberg looked at this worried mother and said, ‘Remember you gave birth to a baby, not just a leg.’ That’s when I realized I had spent the first part of my baby’s life consumed with what I thought my son would not be able to do instead of all of the things he would accomplish even with his difference. I’ve held onto that advice and have been able to remember to always keep my son Jackson, the boy, in mind when making treatment decisions.”

“Dr. McClure has taken over Jackson’s care…. Jackson has transitioned well over to Dr. McClure and has even enjoyed follow-up visits with him. At one appointment, Jackson was able to ‘help’ with a few strut changes on his frame. Dr. McClure has the ability to calm Jackson while completing these much-needed after-surgery adjustments. He definitely has proven that he too is a “person first” doctor who cares not just about surgical outcomes, but Jackson’s overall well-being.”

At his recent clinic visit, Jackson got news that he will have his next surgery next summer. His family is excited to have this summer “off” from surgery. They look forward to having fun in the sun and water!