Katia's Story

Katia's Story

  • Location:        Madrid, Spain      

  • Born:             1995

  • Diagnosis:      Unilateral PFFD
  • Treatment:      Lengthening
  • Told by:         Mom and Dad

  • Date written:  8/15/97

    Dear friends,



    We have a little girl that was born on September 1995 with PFFD. After reading
    other parent's comments with similar problems and feelings, we have decided
    to write to thank their support and also try to add something, even if our
    English is not very accurate (our mother language is Spanish. Forgive us
    for the mistakes).



    Since Katia, our precious little baby :-), was born, we visited several doctors.
    Katia has a coxa vara as well as short congenital femur. Her fibula and tibia
    is also a little shorter and her foot is a little smaller. The first doctor
    told us about limb lengthening and he wanted to put her in a brace in order
    to allow her to walk taking out weight from her hip. The prosthesis was a
    Thomas splint, used commonly for the Perthes disease. We try to read and
    find out as much as we could about the disease. The information that we got
    made us suspect that the splint was a bad idea. We visited a second doctor
    who only confirmed the treatment. But we weren't convinced yet. Katia was
    16 months old and she couldn't move one foot with that splint, that was very
    heavy for her weak leg. The splint didn't allow her to bend her knee. She
    couldn't be standing up either. Her mom couldn't leave her walking alone
    and if she fell down, she couldn't move from the position on the floor.



    Then we visited a third doctor. This one also recommended lengthening of
    the leg and surgery for the hip, but he thought that the splint was a wrong
    decision and Katia could developed better walking with a platform shoe. However,
    he told us that she would need five or six operations and at the end of her
    development she would remain with ten to fifteen centimeters (four to five
    inches) of difference. He told us that in a case like Katia's the common
    treatment in USA should be amputation, but in Europe doctors are more
    "conservatives" and they can face any possible risks of the operations because
    the system protect them from law problems (at least in Spain it's true).
    We changed the splint for a platform shoe and finally she starts walking.
    This was wonderful but we had already many doubts. Would be worth to perform
    so many operations with possible complications and an important difference
    as final result?



    We decided to find a fourth opinion! We live in Madrid and traveled to Barcelona
    to see another doctor. He told us that Katia's problem could be solved. She
    will need surgery for the hip and later three or four lengthening, but at
    least we saw some light at the end of the darkness. Katia, who was only twenty
    months old, felt happy and repeated continuously that the doctor was
    good-looking. The information that this doctor gave us was the same of that
    we had read about this disease and lengthening methods. He showed us slides
    of X-rays from other children (one of PFFD C) and we could see the good final
    results. Then we trusted on him.



    What we have learned from all this? This problem is very rare, and there
    are several ways to consider it and treat it. Any case is different but,
    certainly, some doctors recommend, perhaps too quickly, amputation (this
    alternative has the problem that if later researchers find other solutions,
    could be impossible to apply. Of course, to have an artificial limb doesn't
    mean a worse life. We know a woman married and with two children that was
    born without the right arm. She wears an prosthesis that permitted her to
    study architecture in the University and now she is a creative architect).
    This is a too hard decision for parents, but maybe in some cases there isn't
    another solution. Lengthening, however, can be performed in many cases due
    to doctor Ilizarov and other researchers.



    By the way, if you wanted to know more about limb lengthening, there is a
    web page that tells the history of it, with some references to the Maryland
    Center of Baltimore and his director, doctor Paley. Home page A.S.A.M.I.
    International:
    http://www.fixtool.com/asami/
    (ASAMI is an Association for the study and application of the Ilizarov method).



    We couldn't get from books how the situation of children with PFFD, many
    times wearing prosthesis, having obstacles to walk etc., affect them
    psychologically in normal life and when they pass a period of time in the
    hospital or a convalescence. Doctors repeated us that we shouldn't protect
    our daughter too much, because she would be later spoiled and selfish, although
    that is parent's normal behavior. We have a friend, teacher of high school,
    that this year was visited by the mother of a difficult pupil. The girl is
    17 years old, a good student, but she has social problems in her relationship
    with other students and some teachers. She was born with PFFD and some operations
    were performed in her leg and her mother told our friend that the girl
    experienced her disease with a very rebel mood (Why me? It is unfair!) and
    she needs a lot of support and love, even now when lengthening process is
    over and her legs are equal. We know that every child is and reacts different
    but probably some other parents could speak about their experiences and all
    of us learn more about it.



    Finally we would like to tell you that we have also cried, sometimes furious,
    sometimes sad, sometimes furious and sad at the same time, and we still suffer
    when we think in all the difficulties that Katia will have to overcome, but
    perhaps for this reason she will became to be stronger and sensitive to other
    suffering people if we are able to do well. And today, thanks to your words,
    we don't feel so lonely.



    We would be happy to correspond with any of you.



    Carlos Carro and Marla Zárate

    (Katia's dad and mom)

    dupla@sinix.net

    Madrid (Spain)