Leg Lengthening Surgery – By: Lauren and Matt (Reid’s Parents):
Reid has always been a resilient child, more so than most children, kind of like a superhero of sorts. Walking into doctor’s offices, radiology departments, and therapy sessions with a little bit of fear but a lot of confidence. We had known since he was 6 months old that he had RSS 11p15LOM, and had noticed the hemihypertrophy and limb length discrepancies even earlier than that. Reid’s leg length discrepancy is significant, enough to warrant a noticeable shoe lift on all of his left shoes.
At this point in Reid’s journey, we are fortunate to have the best doctors in the country managing his condition and subsequent care. Unfortunately, this was not always the case early in his life. One such experience was with a pediatric orthopedic surgeon who, despite Reid already being on growth hormone since age 2, told us that the only option to fix his leg length discrepancy was to stunt the growth in his right leg – the longer leg. We knew to question this (thank goodness!) because of the education we received from the MAGIC Foundation and Reid’s endocrinologist Dr. Harbison. Stunting growth is not appropriate for RSS kids, and while it may be a viable option for some pediatric medical situations, it is not logical when you consider the entire RSS condition. Why stop growth when we are fighting so hard for every inch on the growth chart?
We ended up in Dr. Rozbruch’s office soon after at the strong encouragement of Dr. Harbison. We had the same reaction within minutes of meeting him as we did with Dr. Harbison – a massive exhale followed by a feeling of pure elation that we had found someone willing and able to consider Reid’s entire condition when doing their part to focus on their specialty of care. Dr. Rozbruch put us at ease immediately, explained the science behind his approach to lengthen Reid’s leg to tackle the discrepancy, and assured us we had done the right thing by seeking another opinion. At that time, Reid was about 3-years-old, too young to be considering a limb lengthening surgery, but perfect timing for Dr. Rozbruch to begin monitoring Reid’s leg length through periodic x-rays and telling us exactly how much of a shoe lift was necessary to keep Reid balanced. Dr. Rozbruch also shared that he had hoped to build a rapport with Reid over the subsequent years so that when it was time for surgery, Reid would have a comfort level with him and his medical team. As parents, this was so important to hear; we didn’t realize how important it would be until it was time for surgery.
During one of our regular check-in appointments with Dr. Rozbruch, he proposed a few options for us to consider – have one surgery to fix Reid’s discrepancy closer to his teen years, or split the surgery into 2 phases (a tibia lengthening at early elementary age and a femur lengthening as a pre-teen). Without judgment or force, Dr. Rozbruch explained the pros and cons, what he liked and disliked as a surgeon about both options, and what he liked and disliked about both options as a parent. He gave us time to consider the options; we didn’t have to make an immediate choice right then and there, which was so helpful to our decision-making process. We chose to split the surgery into 2 phases, with the first surgery taking place at age 5 and the second surgery anticipated to take place at age 12.
For us, there were several things that resonated when considering Dr. Rozbruch’s pros and cons. We wanted Reid to have two faster recoveries rather than a longer, more difficult one. We also wanted Reid to experience whatever physical activity he wanted to put his energy into without having to deal with a shoe lift or lack the balance to perform at his best. Lastly, we did not want Reid to feel self-conscious about his lift as he grows older, especially as he gets older and progresses through school. We knew the shoe lift would only get larger and more noticeable; there would be a greater chance of the shoe lift getting in the way of his ability to grow socially with his peers in addition to all the other common social challenges that all kids face. No reason to delay fixing the discrepancy; we knew the surgery was necessary to prevent joint and spine issues in Reid’s adult years. It was wasn’t a case of do we or don’t we, but a case of when and how.
As the surgery date approached, our anxiety was at an all time high. We knew it was the right choice. We knew we were in more than capable hands, and had been slowly preparing Reid for the procedure and recovery process. As scared as we were despite knowing all would be OK, we were strong for Reid, explaining things in a way that was easy for a 5-year-old to understand but without hiding anything from him.
Logistically, it was a lot of work. We had to take time off of work, prepare family to take care of our daughter in our absence, find a place to stay so we could be close to the hospital in those 4 weeks after the surgery, and work with Reid’s school to gather school work and get his time away excused. We relied on a few former patients of Dr. Rozbruch to help us better understand what to be prepared for. Those conversations with parents were incredibly helpful. Dr. Rozbruch and HSS team also provided us with patient guides and FAQs, as well as made themselves available via email for any question we had – ANY question at all.
Surgery day was scary. Everything went perfect – HSS is the best hospital we have ever been to, but as a parent there is no amount of peace of mind that can help you prepare for the experience. Reid was in surgery for about 90 minutes. Only one parent was permitted to be with him that day; mothers just have a way with these kinds of stressful situations I guess, so I didn’t hesitate to become the primary caretaker. I was allowed to be with him in the pre-op unit and walk alongside him as they wheeled him into the operating room. Dr. Rozbruch came out to visit right before and after the surgery. As scared as I was, I was calm and can only attribute that to trusting Dr. Rozbruch implicitly; getting to know him throughout the years, as well as attending two of his lectures at the MAGIC Convention was all time well spent leading up to this moment.
I was able to stay with Reid in the post-op unit as the anesthesia wore off. That time in the post-op unit was definitely the hardest on Mom; I had to be there when he woke up and saw that he had metal hardware attached to the bottom part of his leg, but on the flip side, I was also there when my son needed me to rationalize what he was seeing and experiencing. It was such a mix of emotions and a moment I wasn’t sure I could get through. Fortunately, the post-op nurse was top notch and nursed us both during that hour when our world changed.
Reid was moved to an inpatient room where both parents were able to visit. Dr. Rozbruch, various members of his team, the unit nurses, and staff physical therapists came to visit us, check in on Reid, and explain more about what was done and how to take care of his surgical site after leaving the hospital. We stayed for two nights before being discharged.
Legs can be lengthened one of two ways – by inserting a rod into the bone and using magnets to lengthen the leg or by attaching an external fixator to the outside of the leg and turning the struts (or screws if you will) to lengthen the leg. The surgery Reid experienced was the attachment of an external fixator. Dr. Rozbruch and his operating team first break the leg bone being lengthened (in Reid’s case, his tibia) and then attach the external fixator using a combination of screws and pins. The pin sites (where the pins meet the skin) must be kept clean and infection-free. The struts (or screws) are turned ever so slightly a few times a day for a handful of weeks (called the Lengthening period). The broken leg bone begins to heal during this period, but not enough to disturb the lengthening. Once the struts have reached the necessary length, the leg has been successfully lengthened and the bone accelerates its healing process now that it is stable and no longer being stretched apart vertically.
Reid’s lengthening period was approximately 4 weeks, and during this time he was required to do several home stretching exercises 3 times a day in addition to outpatient physical therapy at HSS 3 times a week. He initially started out using a wheelchair, but quickly progressed to a walker and then to crutches. Within days of surgery, Reid was walking with the support of a walker, slowly and infrequently at first, but then as if nothing was holding him back. Because Reid has continued to take growth hormone for his RSS condition, the healing process of the broken tibia was not as challenging as it would have been for someone not taking growth hormone. The hardest part of Reid’s recovery was strengthening and lengthening the leg muscles that were affected by the bone lengthening. After 4 weeks away from home, we came home to continue Reid’s recovery.
Reid was able to go back to school during his recovery as long as he took it easy, which meant no recess or outside play at school. At home, his activities were fairly normal, and Dr. Rozbruch encouraged Reid to do what he could handle (within medical guidelines of course!). Reid continued doing home exercises 3 times a day and physical therapy 3 times a week until the external fixator was removed, approximately 3.5 months after it was attached. During those 3.5 months, we continued to visit Dr. Rozbruch for follow up appointments.
The surgery to remove the external fixator was a much easier and shorter process. Reid was able to leave the hospital the same day with crutches and a traditional cast that extended from the middle of this thigh to his toes. Dealing with the cast was actually harder than the fixator! We had to keep it dry when bathing and the lack of flexibility made it harder for Reid to do certain activities that he could do with the fixator. Fortunately, the cast only needed to be on for a few weeks before it was removed approximately 4 months after the initial surgery. As the bone continued the last phases of its healing process, Reid returned to all of his normal physical activity except for running in the sand and jumping into the waves on our summer vacation – two things Dr. Rozbruch asked him to not to do for a few more weeks.
Our last post-surgical visit to Dr. Rozbruch was approximately 7 months after the initial surgery. It was a long 7 months, but every moment was worth it, every milestone was joyous, and every pair of shoes that we’ve been able to buy and wear out of the store (without taking them to a shoe cobbler!) has been like a badge of honor. So many of our family, friends, and strangers (even in NYC!) have been cheering Reid on, checking in on him, calling him a superhero. Reid is amazing, strong, resilient, and confident. He has built wonderful relationships with his doctors, including Dr. Rozbruch and Dr. Harbison; he counts down the days until we visit them next. We are so thankful to have the support and access to world-renowned medical professionals who show their passion for their craft in everything they do.
We fully support leg lengthening for children and adults that have a significant discrepancy. The benefits outweigh the temporary pain, and the confidence gained is remarkable. Now at age 6, Reid just finished playing his first season of Pinto league baseball, a season that started 3 days after our last post-surgical visit with Dr. Rozbruch. You would never know this superhero had a broken leg and a metal fixator just 4 months ago.