Talipes Information and Parental Support Group
Date: 26 Sept 1998
From: Deborah <DEBSIMP@aol.com>
Here is the story of my daughter Georgina (Georgi), she was born
on 27 March 1997 - we live in the UK.
Georgi was born with severe club feet. They were strapped from 3 weeks old to about 4
months when she got to strong for the straps which started to cut into the skin above her
knees and make them bleed. She had surgery at 7 months old, each foot was operated on
separately - at this time she had soft tissue releases. She had big problems with the
casts, they were changed under general about 6 times in about 2 months.
When her casts were removed her feet were perfect. Within a few days her feet had started
to move back to clubfeet position - so she was put back in plaster for a further month,
but we had already lost the correction on one of her feet.
We had problems during the Casting for the AFO's, the technician and two nurses held
Georgi on the table while the casts were made, the technician managed to move her foot
into a perfect position although our doctor said she would need surgery to achieve this.
She was in so much pain - needless to say in hindsight I feel so guilty ....... why did I
let them hurt my baby so much. Since this has happened I have spoken to numerous doctors
and they have all said that AFO's are for holding not correcting, so therefore this
procedure was totally unnecessary. The worst thing about this was that the AFO's didn't
fit as it was not possible to get her feet into the position of the AFO's so they were
never worn on the instructions of our Doctor.
She now has a morbid fear of the plaster theatre where the casting was orginally carried
out, and as soon as she see's the Sister, Georgi starts going into hysterics. She is also
now so scared of strangers and anyone in uniforms as she associates them with causing her
pain.
By the time she was 11 months her feet had completely lost their position and were turning
again. As she was not standing there was nothing we could do but watch them.
At 14 months she had her second surgery on both feet, again each foot was operated on
separately, this time pins would be inserted to try to maintain the position. Again she
had plaster problems, we eventually found out that she objected to having her toes
squashed together as she has big gaps between them. This time the AFO's were cast under
general, so she did not have to go through that upset again.
Pain Relief: For the first three operation Georgi had caudal blocks, then morphine and
Voltrol, even with all this she was in a lot of pain - (My heart was breaking). For the
last operation I asked if she could have an epidural left in after the surgery - what a
difference, she was still unwell and very uncomfortable but not in pain. She even sat up
in her cot and played with her toys. The epidural was left in for 24 hours after surgery.
At 14 month she had two surgerys two weeks apart I found that after the 1st surgery she
was moving around alot, trying to pull herself up on the cot, turning over etc. When she
had the epidural, she was unable to use her legs, so she stayed in one position, was alot
calmer. What surprised me was that she never once touched her IV tubes - it was almost as
if she knew they were helping her.
Georgi was very unsettled after this surgery, she had night terrors which would involve
her waking up screaming, there was nothing you could do to calm her down, except cuddle
her, take her downstairs turn all the lights on and stay up with her for about 1-2 hours.
This went on for about 3 months - I'm glad to say she seems to have got over this now.
When the plasters were removed, she had sores on her feet and part of her scar was
bleeding, I was surprised to see how beaten up her feet looked. She has a scar above her
big toe where the pin was removed, and another on her heel.
Her AFO's fitted, and she has to wear them most of the day and night until she is walking,
but at 18 months old, she is still a long way from that. She can now stand when holding
onto something - but not for more than 30 seconds then she just collapses onto the floor.
She also has Physio - but she finds this very painful and screams the house down, it is
very hard to convince yourself that you are doing this for her good. I also massage oils
into her scars and legs to help the healing.
Georgi is very double jointed (Hyper Mobile), because her feet are now forward facing and
flat, she has decided that she will twist her whole leg from her hips round so that her
feet are back to a clubfoot position. Due to this, I leave her AFO's on most of the time.
24 September 98 - Her feet are still able to get into a correct position, although to look
at them they have definitely turned in again. Still not walking - I think her brain is
working on talking.