Fixator Covers

One of our moms, Amy is making fixator covers & modified clothing. I've attached her business card here as well as on our resource page.

Congenital Limb Differences Chat

Time: 8:00 PM EST   This is the time zone for Baltimore , MD or Washington , DC

Place: http://www.chatzy.com/600868137410  (http://www.chatzy.com/limblength)

COMING & GOING: When you enter the room, remember to press "join chat", and let the helpers know if you are lurking (no questions) or not.
When you are ready to leave the chat, please type in either "/bye" or "/leave"  (be sure to put in the slash). That way you disappear from our waiting list.
ORDER OF QUESTIONS: Chatters from an area where it is the middle of the night (eg, Europe) are given preference. Otherwise, we take chatters in the order in which they enter the room, although you may trade your positions among yourselves if you would like.  Remember that you must be *active* in the room when we are taking down the order. Names that are "left over", but timed out are not counted until that person re-enters the chat. If we have newly diagnosed families (you all remember how that feels!)  we want to make sure that they get their questions answered, so we may prioritize them and move them further up in the line if time is running short. We will squeeze in as many chatters as we can, so *everyone* will need to be mindful of the time and you may have to skip some of your questions if we need to put on a time limit. For Dr. Standard's established patients, don't forget - he now has a "Communications Physician Assistant", so if you have routine questions about PT, meds, x-rays etc, it would actually be quicker to contact Allison.  She confers with him every day with a pile of questions, and then gets back to the callers.
X-RAYS: if you are going to send any for Dr Standard to review, please be sure to send them to both him (sstandar@lifebridgehealth.org ... no D on the end) and me at this email, so that I can keep track of who has sent them and give him a list ahead of time. If you've mailed us x-rays, please drop me an email so I can keep track. It would also be helpful if you could make sure that you have a copy of the x-rays available to re-email to him, in case he has trouble locating the original email. Please be sure to use a title for the email that will make it easy for him to locate, such as using the child's name. Alternatively, you can post the x-rays to a site such as Photobucket or Flickr (make sure to make the album public) and then just paste in the address of the album when it is your turn. That really helps to speed things up. It's also helpful for the "fellows" (ie physicians who are here for special training) who act as helpers during the chat because they get to review them and learn too. If I have to re-forward x-rays to him during the chat, I will send them to his HOME email address to speed up the process; if this is a problem for you, please let me know.

Internet/Chatzy problems: These seem to have been minimized, however, If there is a chatzy problem again, and people cannot get into the room for a half hour, we will consider the chat canceled.  If we hear of any outages we will try to post what we know on the ICLL Facebook page - http://www.facebook.com/limblength  

Hope to see you on Thursday. And if possible please RSVP to this email one way or the other so that we have an idea of how many to expect and how to pace the chat

 

 

 

Lee

 

Buzz's Story

Byron Raubenheimer - `Perfect Imperfection'

On March 5, 1981 we waited with bated breath for the arrival of Byron,our son, longed for companion to Jessica, our two year old daughter.
From Mark's vantage point outside the theatre doors, he saw him arrive by caesarean section and was overwhelmed with joy. A few minutes later he saw a look of concern on all the doctor's faces and only then did the thought cross his mind that there could be a problem. The common saying "I don't care what the baby is, as long as it has ten  fingers and ten toes," took on a completely new meaning!
 On closer inspection, the paediatrician discovered that all was not  well with our son's right leg. The deformity that had occurred was  strange to all the doctors in attendance. To cut a long story short, the deformity was identified as Paraxial Fibular Hemimelia, a very  rare disorder. It had never been seen before in the city which we lived. This means a congenital absence of the fibula, one of the two long  bones in the lower leg. The shortening of the muscles in the lower  leg places undue stress on the tibia causing anterior bowing of the  tibia as well as other associated problems. In Buzz's case there was  three toes been present on his little foot. The absence of the fibula  meant that there was no ankle bone and that the foot was pulled into a  distorted position. The findings for this distortion were explained  as follows "… the shortening of the peroneal and triceps surae muscles  places undue strain on the tibia and foot, causing bowing of the leg  and equinovalgus deformity of the foot." His little foot was also 3  to 4 sizes smaller than his left foot.
We were faced with various factors which were a constant cause of  frustration. No doctor could say with conviction what procedures  should be followed or what degree of success could be expected. I  might add that the word `amputation' had been totally discarded from  our vocabulary as I sincerely believed that we would eventually find  someone who knew about the deformity and who would be willing to `have a go' to save our son's leg. Up until this time, every doctor that we  saw just said "Amputation is your best bet, I think!"
 Out of sheer desperation, I consulted an elderly orthopaedic doctor  who had treated me for arch  problems due to wearing high heels as a  young teacher! He agreed to see me and it was such a blessing, as he  instantly named the condition and put me in contact with a family who  lived in another town whose son had the same condition, but in both  legs. He was 16 years old and a meeting was set up between us.  On meeting Paul, my husband and I were very impressed with his degree  of mobility as well as his extremely positive attitude which obviously  boosted our morale greatly! Paul wore built up shoes and had metal  rods down the sides of his legs into his shoes, in order to  straightened the feet. (Callipers) He told us that he ran, drove  tractors and helped out on his parent's farm.
 Our elderly orthopaedic, Dr Percy Lancaster, prescribed an orthosis  for Buzz which was to gently hold the foot in the correct position  morning, noon and night. He also told us about a procedure called  limb lengthening using the Ilizarov fixator and gave me a medical  pamphlet to read. I treasured the pamphlet and still have it today.  This wonderful doctor put us in contact with an expert in another city  and a meeting was set up with a professor at the King Edward Medical  School in Durban, South Africa. Byron was scheduled for his first operation at 9 months of age.
 X-rays showed that the distal part of the fibula was present and that  a tiny bit of the ankle existed. This was excellent news as it was then thought, that the fibular could grow longer. During the surgery,  the stress factors – muscles and tendons were released therefore allowing the foot to be a little straighter and not pulled into the very tight equinovalgus position. An osteotomy was performed on the bowing tibia. This meant that the surgeon sawed through the tibia and  straightend the bone by inserting a long pin (like a kebab skewer!)  through Buzz's heel and into the tibia. This immediately lengthened  the little leg by 2cm! We were thrilled – see doctors!!!!! No amputation at this stage!
 The years passed and we had numerous visits to our fantastic professor at the medical school and Buzz wore an orthosis to keep his leg and  foot straight. This orthotic device was built up so that the foot was in a `high heel' position and we just slipped a normal sneaker over the foot. Byron ran around normally and was such a happy baby. The discrepancy between the right leg and left leg continued to grow so our professor prescribed a built up boot with a calliper down the  side. We were so alarmed at the height of this boot. It measured  10cms! But, guess what, it never held Buzz back! He ran, played  soccer and did more than his peers and was admired by all.
 At the age of nine, the discrepancy was so great that our professor  suggested limb lengthening. This is what our beloved Dr Percy  Lancaster had said when Buzz was an infant. The risks were discussed  and we decided to go ahead. We were going to go for 8cm. The  operation was a wonderful success and after 10 months, we managed to  grow the tibia by 7cm. The Ilizarov fixator was removed and Buzz was allowed home. Unfortunately the leg was not put into plaster and the  leg began to bow at the tibia. Buzz was returned to the theatre and  the fixator was replaced and locked into position for a further 3 months. This was a major setback, but it did not dampen Buzz's  spirits.
 The summer had arrived and all he wanted to do was cool off  under the sprinkler in the garden. We were advised against swimming in case of infection. I got busy and sewed a `waterproof' bag which we pulled over the fixator and Buzz could jump around under the sprinkler. What fun! The wounds were cleaned immediately afterwards and we were fortunate to have no infections.
 Although we had gained 7cms, Buzz had undergone a growth spurt and the  right leg had once again been left behind! He still had to wear the  built up boot. It was kept at 10cm although the leg discrepancy was more.
  Living in South Africa was becoming very difficult due to all the crime, so after much deliberation we decided to immigrate to New Zealand. We realised that we would have to start again in finding a doctor to help us. The built up boot lasted a while and then the time came that  we would need to find a doctor to help us. The principal of Buzz's school put us in contact with a family who had a child with a similar problem and they in turn shared their experiences and we set up a meeting with their doctor. At this stage, the word `amputation' was still forbidden! When we met our New Zealand doctor, he was very blunt and said to Buzz, who was 12 years old "Well, you have a problem with this foot  mate! How about we amputate your foot using a Symes Amputation, then we fit you with a prosthetic leg?" Well, well, there was stunned silence and on the way home, Buzz became very angry and said that he  felt that the doctor was dreadful and so uncaring. Mark and I avoided the subject and began inwardly thinking about the pros and cons of the option.
 At this time, Buzz was busy training for the Weetbix triathlon in  Auckland. Every day we would take him down to the beach to run and  swim. He would get very tired, but would never complain and just kept focused. The triathlon was a major success and Buzz did so well. One evening, he was watching TV and there was a documentary on Mark Ingalls climbing Mount Everest with above knee amputations. He said  "Hey, Mum and Dad! If Mark Ingalls can do that with two artificial legs, just imagine what I could do with just my foot off and an artificial leg!"
 Another appointment was made and we went back to our NZ doctor with a  different attitude. The doctor was thrilled that Buzz was so positive and the date for surgery was set – A week from our appointment. I felt sad that we had not been able to salvage the leg completely, and  that amputation had to now be the order of the day. However, I felt  that Mark and I had done the best that we could and now it was Buzz's turn to make a decision to improve his mobility. The amputation went well and Buzz was in a wheelchair for a while and  then graduated to crutches. After 6 weeks the plaster was removed  from the stump and the leg was measured for the artificial leg. We  were required to wrap the stump daily to `form' it correctly. It was  absolutely heart warming the day that Buzz received his first leg. He  walked up straight and tall for the first time in his life. Wow! My  son was so tall!! Of course, he had to learn to walk again as he had  always bent the left knee to accommodate the shortening in his right  leg. He ran around the fitting room and jumped. Tears poured down  our faces and we wondered to ourselves whether we should have considered amputation in the first place. The answer to this question is simple – "No, we were right the way we  chose to deal with the problem. By going through the process of limb  lengthening, Buzz was able to have a much longer tibia and only a Symes amputation was necessary. Had we not done the limb lengthening,  his leg would not have grown very long and would have had to be  amputated below the knee due to the severity of the muscles and tendons pulling against his tibia.
When we ask Buzz how he feels about his leg and his choice, he is so  happy with his decision. We too, are thrilled with his mobility. It  has been a long journey. Lessons have been learned and our family unit is very strong and close due to all the time spent on visiting  doctors, cleaning wounds and supporting one another. Our beautiful  daughter, Jess, was a tower of strength through out and supported and cared for her little brother throughout school and pre-school. She  has never been jealous or shown any animosity about the time that we  have had to spend with Buzz. Buzz's predicted height is 6'7inches! He is almost there and he is  turning 17 in March this year.We have experienced both amputation and limb lengthening and believe  that both options have their merits
Regards - Claire, Mark, Jessica and Buzz Raubenheimer

Thanks to Claire for sharing this story back in 2008.  She updated me with this in 2011...
I just wanted to share with all the mums and dads out there that my fabulous son, Byron - Buzz has just participated in the World Cup Para Snowboarding competition and came 5th in the World!!!  He is New Zealand's number 2!!!  See the link below to see the photos of him in action - http://www.zimbio.com/Byron+Raubenheimer/pictures/pro