Born with a rare orthopedic condition, Arthrogryposis, AJ's hands and feet were severely contracted at birth. Having previously met with the doctors at Shriners Hospital in Philadelphia, Adam and Danielle Yenish set their plan into motion, and AJ began receiving treatment on his hands and feet just twenty days after he was born! The trips from Bridgewater, NJ to Philadephia were made weekly for six months to slowly cast his feet and mold his hands into the correct position. Today, AJ is able to walk and move his hands fluidly due to the extraordinary care the physicians/staff of Shriners Hospital-Philadelphia and local therapists provided. AJ's story is one of many that Adam and Danielle have witnessed come out of the orthopedic clinic room where Dr. Harold van Bosse and Dr. Scott Kozin work their miracles. For this reason, the Raise Your Glass Foundation is committing its efforts to recognizing Shriners Hospital-Philadelphia for all they have done, and continue to do, in the lives of children!
Thank You, Dr. vanBosse of Shriners Hospital in Philadelphia
For Believing One Day I Would Walk! ~AJ
2009 vs. 2013
On April 29th 2011, 20 weeks into pregnancy, Lance and Micah Leggitt found out that their baby girl had a condition called Arthrogryposis. After multiple visits with specialists during the pregnancy, most of whom had only heard of the condition, Lance and Micah developed their delivery plan. Their beautiful baby girl, Reece, was born a few weeks early on September 10, 2011. They were prepared for the worst, knowing that God had only the best plan in mind!
Reece was born and her condition affected both her arms and legs. She had club feet, a dislocated knee, a dislocated hip, and multiple contractures in her leg muscles. The muscle in her arms was virtually non-existent, her wrists and fingers were deviated, and her range of motion was extremely limited. In fact, she has so little muscle, that the nurses in the NICU had difficulties drawing blood.
Reece was taken to Children's National Hospital in Washington, DC where they would begin the process of backing out the effects of the contractures. Doctors immediately started serial casting on her legs. At one month old, Reece had bilateral quad and heel cord releases. The little research Lance and Micah had done had indicated that early treatment was key. Once things had settled a little and the next course of treatment proposed was a major hip surgery at three months old, Reece’s parents decided to get a second opinion.
In December of 2011 Reece finally was seen at Shriners Hospital in Philadelphia. After much research, Reece’s parents found that THE #1 Doctors for Arthrogryposis were there. How blessed they felt that it was only 3 hours from their home in Northern Virginia! They met with Dr. Harold Van Bosse (lower extremity expert) and Dr. Scott Kozin (upper extremity expert). Drs. Van Bosse and Kozin were very informative about the path ahead and gave Reece’s parents a course of treatment that made sense. Surgery would be held off until baby Reece was stronger, and, in the meantime, treatment would focus on intensive physical therapy and casting. Shriners Hospital in Philadelphia was a godsend. Lance and Micah no longer felt like their daughter’s treatment was a total guessing game, for the doctors at Shriners had a pathway for her independence.
Since that December 2011 appointment, Reece has continued to receive intensive casting, and a physical therapy regime has begun under the supervision of Shriners. Reece had hip surgery in January of 2013 and she has begun using a muscle stimulation device to help strengthen her arms (the muscle stimulation device was provided by a wonderful medical device company out of Tampa, FL called EMSI).
Reece is light years ahead of where she was at birth. She is slowly gaining function in her arms and can even feed herself with a spoon and fork. Her feet are straight and she can stand on her own with the assistance of leg braces. In February 2014, she took her first independent steps!
Lance and Micah are very blessed to have the wonderful doctors and staff at Shriners Hospital in Philadelphia caring for their daughter, and, “Raise Our Glass to Shriners’ dedication in providing the best care for children across the country.”
I get air sick. I just wanted to start with that in case anyone is under any delusion that I enjoy flying 3,000 miles one-way from California to Philadelphia to see one specific doctor. My family lives five minutes away from the hospital that U.S. News ranked #2 in the nation for orthopedics. My daughter, Laelia (LAY-Lee-Uh), was not only correctly diagnosed with arthrogryposis the morning after she was born, but also with the correct type of arthrogryposis, out of more than 400 types. Our pediatrician could not only pronounce arthrogryposis, but upon our first visit he produced a photo of himself and another patient with AMC–a photo affectionately on his desk. After hearing from so many other families I realize our story is rare for how easy we had it. If anyone was blessed with a working knowledge of one of the rarest conditions in the world right from the start, it was us. If we could have had our daughter anywhere in the world, San Diego would have been hand picked.
Yet doctors gave up hope.
I can’t explain it. Well, it’s true that my daughter did not really move her arms or legs for the first year of her life. She also has extremely low muscle tone that one local doctor described as the lowest muscle tone that he’d ever seen in kids with AMC. Despite hearing that I continued to make appointments and try to get more help for my daughter. I must have been annoying because the head surgeon actually took my shoulders in his hands and told me to accept that my daughter was disabled. Then he left the room without signing the prescription for splints in my hand. It was for knee splints and the doctors were convinced that straightening Laelia’s knees would not allow her to be comfortable in a wheelchair where they predicted she would spend her life. Every doctor’s visit came with a wave of depression as we grieved the loss of hope. The last glimmer of hope to die was when we learned about an arthrogryposis clinic in Seattle from a friend who was willing to pay for us to go there. It was the final nail in the coffin when that orthopedic big wig gave up on our daughter after one visit. He would make the fifth pediatric orthopedic doctor to say, “Nothing to be done. See me in six months.”
We found out about Dr. van Bosse after we had already given up. I hate to admit it. Even when success stories were pouring out of Shriners in Philly, I was still skeptical. It wasn’t until our friend Cheryl and her daughter, Tracey, spoke up about their personal experience with Dr. van Bosse that we agreed to see him.
At this point I felt like an AMC expert. I was familiar with my surgery options, or what little there were. I knew all about splints, walkers, weight-bearing, wheelchairs, casting and stretching. I owned the AMC Atlas textbook. And my daughter had already been through two major surgeries and some tendonotomies before local doctors had told us she was “done.” I felt so certain she had more potential than doctors could see. So we went to Philly.
The trip to Philly was rough. So rough that I was praying the great and powerful doctor was merely just the man behind the curtain.
Instead I got to meet my very first expert in the AMC orthopedic field. I was impressed with a doctor who listens, examines and waits. But I’m not here to write about bedside manner, although I remain super impressed with a doctor who will email me back within 24 hours with answers to my medical questions. Dr. van Bosse introduced us to an entirely different methodology So far Laelia had only had soft tissue surgeries. We kept hacking at precious resources my daughter needed to move. Instead Dr. van Bosse introduced us to derotational osteotomies. And unlike the doctor in Seattle who first mentioned them but would only perform that surgery on patients who “deserved” it (his PT said Laelia’s muscles were too weak), Dr. van Bosse left his crystal ball of future predictions at home and focused on the issues at hand. The most important thing was to give her a chance and see what she did with it. And unlike others we’d seen, all surgical suggestions he made were backed up by evidence. I was shown my daughter’s x-rays and then x-rays of the same exact lower body contractures of other anonymous patients before and after the surgeries he was proposing. It wasn’t a “take my word for it” pitch at all. It was a course of treatment over the next few years with known results. Instead of, “Will my daughter walk?” my questions became, “When will my daughter walk?”
Hips before. Hips after.
Knees before. Knees now. Perfectly straight and aligned.
My daughter walks. (Now I’m crying as I write this.) Everywhere. Up and down inclines, around the grocery store, all over the house. Without a gait trainer. Without a walker. Without pediatric crutches. And recently she took a few steps without even her leg braces on. Having correct alignment allowed her to exercise and grow muscles in her legs we didn’t even know she had. I can’t begin to describe how her life has improved dramatically since she gained the ability to stand and walk, something she never would have done without Dr. van Bosse. My daughter was almost five when I had my first conversation with her about walking in the street, opening the bathroom door when I’m in there and running with scissors–conversations I was told we would never have. If not for Dr. van Bosse, Laelia would be sitting on wide, abducted legs right now.
Doctors should never give up on children. Children are the very definition of potential. Dr. van Bosse is the very definition of excellence in care. And all my parent friends will tell you, he never gives up.
And I joyfully get air sick to see him.
For more on Laelia's journey, visit: www.laeliasky.com
I was born 25 years ago with arthrogryposis affecting every joint in all of four of my limbs. I had numerous orthopedic surgeries as a child, most of them on my lower extremities. All of them were done by the pediatric orthopedist closest to my where I grew up in Northwestern Ohio. I had major reconstruction surgery on my clubfoot at 9 months and as is typical in arthrogryposis it recurred within just a few years. Due to inadequate expertise in the complexities of treating arthrogrypotic clubfoot my surgeon at the time didn’t treat the recurrence and only recommended surgery after all of my bones spontaneously fused together. My parents opted to wait on the surgery. I also a leg length discrepancy, my left leg was ¾ of an inch longer. I proceeded to walk around like this for the next 15 years. By the time I reached my late teens I was getting fed up with my clubfoot not fitting into anything but tennis shoes and crocs. Dress shoes were pretty much out of the question, not too mention my gait was horrible.
Through AMC Support I found Dr. Harold van Bosse, at the time he ran the AMC Clinic at NYU Hospital for Joint Diseases. My first appointment with him was an eye opening experience. Not only was my clubfoot worse that had been diagnosed by my former surgeon, my left leg was actually a full 2.3 inches longer than the right, my right hip was also severely malformed leaving my femur twisted outwards. Prior to this appointment I had sought the opinion of 5 other orthopedic surgeons and all recommended the same surgery to correct my foot but all had the same underlying message, just be happy you walk at all. All of them also didn’t mention my severe leg length discrepancy. One even had the audacity to suggest I start using a wheelchair instead of correcting my foot.
Dr. van Bosse’s surgical approach to treating my foot was different. He also recommended lengthening my short leg and rotating my femur into alignment. In creating a treatment plan he was seeing the potential I had to walk better, more upright and with less energy exertion. His plan was to maximize my potential. He transferred to Shriners Hospital in Philadelphia shortly after I initially saw him.
Over the course of 3 years Dr. van Bosse corrected my clubfoot, lengthened my right leg 2.3 inches and under his recommendations his colleague at Shriners rotated my femur to face forward. All three of these procedures required the use of external fixators. Correcting my clubfoot made my foot flatter to the ground so I now bear weight on the bottom of my foot instead of the side of it. Lengthening my right leg made it the same length as the left and untwisting my femur makes my knee and foot face forward instead of outward. All three of these surgeries resulted in a gait that is closer to normal, more energy efficient and does not require me to wear a lift on my shoe anymore. I stand upright and even instead of hunched forward and leaning to one side. I can now wear more than just tennis shoes and crocs and I now own dressier shoes. I no longer hop from step to step when going down steps, I can actually take controlled, deliberate steps down. I can go up more staircases without using a railing. Sitting is also easier.
In my 3 years of treatment I not only gained a more functional leg and a better gait, I learned what excellent and effective treatment for arthrogryposis looks like and I learned what a truly exceptional physician Dr. van Bosse is. I didn’t start treatment with Dr. van Bosse until I was in my late teens so I live with the effects of the ineffective treatment I had as a child. After seeing his treatment approach to arthrogryposis I know if I had been in his care from birth I would have walked better and at an earlier age. I know the babies and kids in Dr. van Bosse’s care will be better off as adults because of the treatment they’re receiving now and I will be forever grateful for what Dr. van Bosse and Shriner’s Hospitals for Children has done for me.