Meet Our Patients
Meet Our Patients
My husband and I learned about Reilly's condition when I was about 5 months pregnant. We were referred to a neonatologist who we saw every few weeks until his birth for tests/scans and measurements through ultrasounds. She then referred us to a pediatric orthopedic surgeon, but the meeting did not go well. Then, during an interview with our pediatrician, Dr. Shawn Standard's name came up in conversation. He said he had never met him personally, but had heard great things.
We first met with Dr. Standard when Reilly was only about one month old. During the first meeting, we instantly knew we were in the right place! It was clear that Dr. Standard knew what he was doing/talking about and that he truly cared.
Reilly was born with unilateral PFFD (Proximal Femoral Focal Deficiency), also known as CFD (Congenital Femoral Deficiency). It is a birth defect affecting the pelvic area. In Reilly's case his right leg is affected. When he was one, he had his first surgery, the SUPER hip surgery. In short, this was a reconstruction of his hip. Thankfully everything was there, but it had formed differently due to the lack of a femur bone. He was in a spica cast for about 10 weeks total (6 permanently and then the last 4 it was made into a removable cast which he had to wear any time he tried to stand, walk, roll, etc). The SUPER hip surgery consisted of placing pins in his ankle to stabilize it, and repairing his knock-knee.
Approximately one year later, he underwent another surgery to remove a plate from his hip and to have a rod inserted in his femur to stabilize it until his first lengthening surgery on February 11, 2014. In that surgery his femur bone was surgically cut and an external fixator with nine pins was placed in the bone. He wore the ex-fix from February through early September 2014.
To lengthen the bone, we used an Allen wrench to turn the lengthening bar 1/4 turn, 3-4 times daily until May 22, 2014, when we stopped turning to let the bone heal. The lower half of his fixator was removed on July 25, 2014 and the remaining parts were removed on Sept 5, 2014. When the remaining ex-fix parts were removed, they placed another rod into his femur to stabilize the bone.
On July 31, 2015 he will have that femoral rod surgically removed and an eight-PLATE will be screwed into the growth plate at the top of the tibia. While in surgery they will determine if a second eight-PLATE needs to be placed at the bottom of his femur. Throughout the lengthening process (and post-op) Reilly had to go through months of grueling physical therapy, both in water and on land, which was very painful at times. It was definitely not easy for him, but he pushed through it like the little super hero that he is!
The July surgery will not be Reilly's last procedure. He will have at least two more femoral lengthening surgeries and possibly a tibia-lengthening along the way with minor maintenance surgeries in between. The next lengthening will take place between the ages of seven and nine, depending on his growth, and then the next when he is in his pre-teen years.
Throughout this journey we have met so many amazing, supportive, thoughtful people! Without them I am not sure we could have made it through these first four years of Reilly's life. Reilly is loved by so many. He has experienced things in his short life that many people do not in their entire lifetime. He is so brave and strong, and a true inspiration to us and many others. We love him so much and are so proud of him, and so thankful that through all of this he still continues to shine!
The Save-A-Limb Fund has been a lifesaving resource for us. Early last year, Reilly had his first limb-lengthening surgery. Our insurance only covered the first 35 Physical Therapy sessions and Reilly needed more than the allotted amount. He was initially going five days per week and had the external fixator on for the better part of last year. We could not afford to pay for all of his therapy sessions out of pocket, so the Save-A-Limb Fund stepped in to help us with a portion of the cost.
We want to give back to the SAL Fund so that other patients can also benefit from the assistance it provides. We started participating in the annual Save-A-Limb event and this will be our third year!
While we currently have members slowly signing on to be a part of Team Reilly's World, we estimate that our team will be larger than the last two years. There are many who have followed Reilly's journey. To raise money for our team, we are selling Team Reilly's World t-shirts as well as Orioles baseball tickets. We are also in the process of setting up a family fundraiser pizza night at a local restaurant. This year our team will be participating in the 1 Mile "Make A Difference" Walk. To donate, please visit our team page at www.savealimb2015.kintera.org/ReillysWorld
- Stephanie Brown, mother of RIAO patient Reilly
Luke had been home from Ukraine a short while. We first went to Shriners and met with two of their doctors to evaluate his orthopedic needs. He was born with his right leg fully attached to the middle of his back and his left leg was webbed with a club foot. We were not settled with their suggestions for helping Luke, so we sought out another surgeon - Dr. Sponsellor at Johns Hopkins. His suggestion was also to amputate Luke's leg. We again did not feel this was exactly what we wanted for him, so we sought out another opinion. We had a consult with the head of orthopedics at Children's National Medical Center in Washinton, DC. She told us Luke's case was too much for her to handle, but she knew where we should go...and that was to Dr. Standard at RIAO. We met with him and were delighted with Dr. Standard and all of the providers and caregivers for Luke there.
Because we are such a large family, sometimes the cost of medical equipment is difficult for our budget. The Save-A-Limb Fund has provided a walker and other medical items for Luke and his sister, Mya. Specialized braces and training for PT was given so that we could provide better care for him at home. We could not do what we do without the generous support and encouragement from all of the staff at the RIAO. We have several children with medical needs and getting the necessary medical care - visits and equipment - has helped us tremendously. We feel a strong connection to Dr. Standard and his family as well. They have gone above and beyond to support our family in so many ways. The entire RIAO staff has been compassionate and understanding of some of the different needs that a very large family has. Our visits to clinic, or surgery, or even the stays on the floor post-op have all been positive. Managing a child in an ex-fixator can be difficult, but the support of the team at the RIAO is amazing. We love everyone on the team and feel very blessed to have them in our lives as medical providers, as well as friends.
We hope to be at the 10 year celebration in October, mostly to show and share our support of a life-changing organization, the RIAO and the Save-A-Limb Fund. They have been so generous with their financial support, as well as emotional support, to our family. We would like to give them our support and love for all they have done for the members of our family. They have made such a difference, especially in the lives of Luke and Mya . We are grateful that we listened to our "inner heart" and kept getting second opinions until we met Dr. Standard.
- Jeane Briggs, mother of RIAO patient Luke
When it became apparent that our son, Sean, now 15, needed an orthopedist to follow his development, the only doctor I would consider was Dr. Herzenberg. While people spend hours doing research to determine that he is “the doc”, our story is a bit different. I had the privilege of working professionally with Dr. Herzenberg while employed as a physical therapist at Kernan Hospital in the mid 1990’s. There, I was witness to his genius. I met many patients who traveled far and wide seeking out his medical expertise - families whose children had congenital anomalies, people who had an injury to a limb who were told by their local doctor that the only solution was amputation, and people who had dwarfism trying to decide if lengthening to make them taller was really a viable option. It was amazing to watch him evaluate and treat these patients with individual and unique needs. None of the procedures could ever be exactly the same. I was in awe. Furthermore, there was never an “I” in the TEAM of professionals that treated his patients - the patient, nurses, therapists, transport staff, CNAs and family members were always treated with respect and valued as part of the TEAM treating the patient.
In 1999, our son was born approximately six weeks early and had sustained a stroke in-utero with ongoing right hemiparesis. When he was eight months old, we were told he might benefit from an orthopedic evaluation. We started at Kernan and transferred over to the Rubin Institute at its inception. Over the years, Sean has undergone BOTOX injections, tendon transfers in his leg and arm lower extremity, and management of a leg length discrepancy checked annually to ensure proper growth. He is currently being treated for poorly aligned femur and tibia bones, and will have de-rotation osteotomies to both this summer. All of this treatment has been in the very capable hands of this amazing surgeon.
BUT, Dr. “H”, as Sean calls him, is not just an amazing surgeon. He is a caring, compassionate visionary who is extremely humble about his extraordinary capabilities as a doctor and as a person. When our younger son was diagnosed with Type 1 Diabetes and was admitted to Sinai, Dr. Herzenberg took time out of his very busy orthopedic rounds with patients to stop in to say hello and comfort us all. He even donated to our “RIDE to CURE” effort that raises money to find a cure for Type 1.
We were unable to participate in the Save-A-Limb event the inaugural year because Sean could not ride a bike. A few years later, he was riding a recumbent bike so we rode the 6 mile family ride with my husband towing our toddler. A few years later we all rode the family ride, sharing stories with other families as we pedaled the 6 mile course. Last year, the kids had sports commitments so instead of the family ride, my husband and I had a wonderful morning riding 30 miles through the country roads of Baltimore County in honor of our son, Dr. Herzenberg, and this fabulous organization called Save-A-Limb.
- Carolyn Burns, mother of RIAO patient Sean
When asked how I first found the RIAO: My first appointment was on 12/24/1992 when I was 16 months old. My mom brought me to Kernan Hospital and the International Center for Limb Lengthening & Reconstruction after seeing a medical segment on ABC’s “The Home Show” about a revolutionary technique called Limb Lengthening that was being performed there. She had been vaguely told that this procedure might be something in my future but not to bother looking into it as I had to finish growing first. Faced with doing a procedure to “bide us some time” after I turned one, she decided to go hear what a place that focused on this procedure had to say. I became a patient immediately after that visit. When the center moved from Kernan Hospital to Sinai Hospital and became RIAO, we went right along with it. I am now finished with my lengthening journey, but try to return to see Dr. Standard, when possible, to monitor the long term effects of my procedures.
When asked how the RIAO changed my life: The RIAO changed my life by giving me the opportunity to live it to my fullest capabilities. I have had a total of 23 surgeries over 19 of my 24 years of life for two separate orthopedic differences. It has been an intense and long road, but one I am so glad my mom chose for me. She was told this course of treatment would rob me of my childhood but that couldn’t be further from the truth. I missed a minimal amount of time from school and was allowed to participate in dance class for 9 years and be a member of both my town and High School cheerleading squads. I pretty much did everything, if not more, than my peers. I believe my successful outcome was due to a combination of my and my mom’s total commitment to the course of treatment, start to finish, and to the structure of the program offered by RIAO. We had the opportunity to experience first hand a facility in NY City who did not have a program of constant monitoring and physical therapy for their lengthening patients when I was being treated there for my hand difference. Those observations sealed my mom’s thoughts of her always saying “it’s not just the surgery to apply the lengthening device that makes for a successful outcome, but what is done after that matters the most.”
When asked why I support SAL: My mom and I are very big advocates of the concept – Pay It Forward. The compassion, support and genuine caring from Dr. Standard and his staff, Marilyn Richardson, Anil, Erin and the entire Physical Therapy staff, Amy and Bill at the Hackerman Patz House, and the camaraderie of the many families we have connected with over the years has meant the world to myself and my mom. There really isn’t anything we wouldn’t do to help them or any family traveling down the road we have already successfully navigated. My mom always said “if we can help make just one other family’s journey one step easier by sharing what we have learned, then it gives our journey that much more meaning and purpose.” Supporting SAL is just one of the many ways we try to “give back” some of what we have been given.
When asked what I will be doing this year to support SAL: We support SAL in many ways. We are, once again, members of team RIAO and have a fund-raising page in my honor to raise money from family and friends. Since the very first SAL event 10 years ago, we actively volunteer to assist Marilyn Richardson with whatever she needs help with the entire day before, the morning of, and at the event dinner in the evening. I will also, once again, have the honor of walking along side my mom and my very first nurses, Pam Lentz and Pam Wilson. They have all been a constant source of comfort, love and support over the past 24 years and will always have a special place in my heart.
- Jacki Nielsen, RIAO patient