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Morgan's Story: South Africa

Hello to everybody, my name is Charne' Gardiner.
Firstly, I would like to thank you all so much for keeping me sane, educated and in (reasonably) good spirirts over the last few years. I have been comforted by your positive attitudes and experiences through many sleepless nights in front of this screen.

My daughter Morgan was born in August 2005 with unilateral PFFD class B/C.
She arrived 8 weeks premature, after a difficult first preganancy ( bed rest from 14 weeks with high blood pressure). The length discrepancy was not detected on ultrasound (even though I had about 15 scans because of the BP!!) - so to say that we were shocked and surprised is an understatement
She currently wears an extension prosthesis with a rise of about 10cm.
In January this year (she was about 2 1/2 years old) she underwent superhip surgery.
The surgeons attempted a femoral and pelvic osteotomy, and inserted a "pin" into her small femoral head. 8 weeks later, the spica cast came off and the road to recovery began...
However, she complained of pain, her leg was held in abduction, she refused to walk and would not allow us to touch her leg.
X rays were taken and the doctors assured us that more physio is all that she needed. We attempted much of this, which she endured in sweat and tears.

The pin was removed in November - there had been absolutely no bone growth and some screws holding the "fixator" had snapped off. The doctors claimed that because of the severity of the deformity, her "bone growth" had bent the fiaxtor and snapped the screws. They sewed her up and sent her home, without any progress after a long year.
Since then, she is attempting to walk again - and slowly getting her personality back.
The surgeons wish to X Ray her again in Feb, and do the super hip op for the 2nd time thereafter.

I would sincerely appreciate any thoughts/ suggestions and advice from parents whose children have been through this op, successful or not.
My concern is : Why should the op be a success the 2nd time around?
Is common for this op to fail?
What do you think went wrong? (was her femoral head too small?)

I have seen the huge psychological effect that these ops have on our little ones - (and us) and the single mindedness with which the medical profession functions. The doctors have indicated that they would like to do a series of lengthenings on Morgan even though her predicted adult discrepancy is greater than 25cm.
Travellling to the world renowned specialists in the US is not an option for our family. SA doctors are highly skilled but probably lack experience due to the rarity of PFFD in the country. (Morgans doctors have worked with Dr Paley on one occasion in Baltimore.)

Thanks again to all of you who have shared your stories over the years on this site.

Kindest regards
Charne' Gardiner

Comments

Hi my name is ana, my son Julian is 8 mths. old born with pffd, he is missing a joint in his hip, which dr's. say he will not walk because his hip will just keep poping out of socket, why did your daughter need the hip surgey?