During the scan of the second trimester of pregnancy a doctor at the Arnau Hospital (Lleida) detected a dysmetria in her left femur. This was further confirmed by another scan at the Val D’Hebron Hospital (Barcelona). As parents we wanted to know how it was going to develop. A traumatologist spoke to us of a process called “lengthening”.
In May 2003 Laura was born. She was diagnosed of a congenital short femur and hypoplastic of the left fibula.
Around her first birthday she began to move with her feet, first with only one, since the other couldn’t reach the ground. To support her left foot the traumatologist proposed a 9 centimetre-raised insole (3,54 inches). This didn’t work.
At any rate, as she got stronger, she had a “femoral inside-skeleton prothesis” with a socket supporting the sacral bone, with which she learned to walk.
We thereafter changed to the San Juan de Dios Hospital (Barcelona) where we were given a more global vision which increased the impossibility that the lengthening wouldn’t be viable. We were advised not to overprotect our child and to help her to be more independent and live more normally. With her prothesis Laura could play any swing and move freely.
At the age of 2, the pseudo-arthrosis focus was cut by medical treatment (surgery) and a retrograde endomedullar fixation placed to correct the coxa-vara. She gained stability of the head of the femur into the hip bone.
Laura spent 9 weeks in a plaster which went from her waist to her left ankle. Three weeks after they removed the plaster, and Laura could walk again with a new orthoprothesis, this time without sacral support (shoe lift). It didn’t not disturb her in any way.
Although Laura grew normally she kept the dysmetria which she had had since before her birth, having the left femur less than the right. Now she is 3, she is 104 centimetres tall (40,94 inches) and has a shortening of the left leg of 13 centimetres (5,12 inches). In the Central Hospital of Asturias (northern Spain) they considered the possibility of lengthening while at the St Juan Hospital (Barcelona) they recommended amputation and use of a prothesis. We have read in many forums that this technique often fails if the difference between the femurs is so great. The alternative treatment is the amputation of the foot to adapt a prothesis with articulation of the knee and ankle.
We are looking for more information and experiences to help us choose the best treatment for Laura. For this reason we would be grateful if you could enter Laura’s case details into your web-site forum.
As we don’t speak English we asked help to translate Laura’s case.
The same site is available in Spanish www.femurcorto.com which people with similar cases and a Spanish speaking specialist can consult. Thank you.
Comments
Lengthening vs. Amputation...
Thank you for sharing all of your story with us!! We all know how hard it can be working through all the medical information, and getting different information from different doctors. For our daughter, McKenna, we were told to amputate at first because her total length difference would be from 8" to 10" by the time she was an adult. We then took a airplane to Baltimore, Maryland and spoke with Dr. Paley and his staff and they said in 3 stages during her childhood we could lengthen the thigh bone to correct this difference, and that is the plan we decided would be best for her. So far McKenna has had 2 lengthenings and a hip repair and she has gained just over 6" of length on her thigh bone. She is currently 10 years old. We also just had her growth plate on the opposite leg scrapped so that thigh bone wouldn't grow anymore. With McKenna's right thigh bone growning at a much slower rate, and with it being 2" short already this will allow her to grow until the right thigh bone doesn't get any longer. Then we will do 1 last lengthening to make the right thigh bone the same length as the left one. It isn't an easy journey, but we still feel for our case this was the best option. We have met several families from all over the world that have seen Dr. Paley and his team over the years, and each one has different complications, but if the doctors feel that lengthening can be done they will help you to get that process started. They also will tell you if lengthening is not an option and will help you with that process as well.
Have you considered coming to the U.S. to get a second opinion? If you would like you can contact some of the doctors you will find on this site and they would be happy to offer their opinions. For us we went with the doctors we felt had the most experience with PFFD and limb lengthening, which ment not having the process done in our home state of Minnesota, but instead flying and living in Baltimore, Maryland for 3 to 4 months for each lengthening, which has worked very well. If you have any further questions for us just drop us a line at ChuckBerg@msn.com, and my wife Karla and I will do our best to help. Good luck, and God bless!!
Sincerely,
Chuck, Karla, Dylan & McKenna
my daughter kiara
Kiara has fibular hemmimelia complet absence of fibula and just did 8cm lenghtening here in boston MA US, with doctor Brian Snyder at childrens hospital. read my story maybe i can help u give u info, I am originally from Portugal.
i can write portuguese if its easier.
take care
sonia(kiaras mom)