After second day in the intensive care, the orthopeadist diagnosed complete lack of tibial, dislocated kniees and ankles and clubfeet.
Two weeks after leaving the hospital, during the orthopedic consultations, we’ve discussed various ways of Bartek’s legs treatments. From higly risky up to amputation.
Having in mind that Bartek doesn’t have, according to the orthopedist, evolved knie caps and ankles, and knowing that all the methods of treatments known to polish surgeons hasn’t brought any results, we have initially decided that if we will not find any other solution, Bartek will have his legs amputatedin the beginning og 2013 and he will learn how to walk in prosthesis.
We just wanted the best for our little one.
We’ve reconciled with the perspective that there’s only amputation, we’ve still been looking for some information on tibial hemimelia.
One day we have came across the website, where we’ve found some information on the doctor from U.S. that specializes in limb lengthening and bones reconstructions, including Bartek’s disease.
Taking an opportunity to contact via e-mail, we’ve asked dr Paley, basing on Bartek’s x-rays, if he’s at all able to say more or less, whether his legs could be saved from the amputation.
Dr Paley has replied that both legs could be saved and invited us for the meeting in Milan, Italy.
Having lots of doubts we’ve flew over to Milan during the long weekend in May.
The doctor has confirmed his initial diagnosis and presented his reconstruction plan. It appeared that in right leg there’s well developed knee cap and there’s small part of tibia present. In left leg there’s no knee cap developed but there’s patella present which is extremely important in the future treatment. In both legs there’s no ankles developed.
Dr Paley has guaranteed in written form that after the surgery and recovery, Bartek will be able, by his own, on his own legs, walk, run and do any sports.
In a nutshell- there will be 3 stages of surgeries.
During each phase, both legs will be operated which will limit the need the time and amount of stays in the hospital.
If we would live in the States, each leg would be operated separately.
In the first phase the doctor will place the feet in the correct position and also will construct the knee cap in left leg. Oth legs will be placed in the external fixators (most likely Ilizarov). Bartek will have this fixator for next 4-6 months(including second phase).
After this phase Bartek wil attend the physical therapy for 8 weeks. During the second phase n right leg the tibial bone will be connected with fibula in one bone. In both ankles there will be ankle caps created.
Similarly after the first phase, after this surgery the physical therapy will also be needed.
This time for only 4 weeks.
After 2-3 months the external fixator will be removed and cast will replace it to keep Bartek’s bones in correct position for next month. After that time special orthesis will need to be worn for some time, but Bartek will be able to walk by his own!
Tibial hemimelia – what’s that?
Hemimelia (hemi- + gr. mélos ‘limb’) a developmental anomaly characterized by the absence or gross shortening of the lower portion of one or more of the limbs. The condition may involve either or both of the bones of the distal arm or leg and is designated according to which is absent or defective, as fibular, radial, tibial, or ulnar hemimelia.
Meaning complete lack of tibial bones. Happens one in a milion live births. Only in 30% cases it applies to both limbs. Charactierized by shortened limb/limbs with clubfoot/clubfeet. If the knie cap is developed, in 90% is instable. The fibula bone is moved axially to the femur. From what we know, there were no billateral tiabila hemimelia cases in Poland so far. We are trying to confirm that.
If your child has been born with the hemimelia – contact us!