Katia's Story
Born: 1995
Told by: Mom and Dad
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)
Madrid (Spain)