Progress of Heather Amy's Feet
Heather Amy was born with Clubfoot (Bilateral Talipes).
Thankfully, we were expecting it after having it picked up on the
20-week ultrasound scan. Even we, with untrained eyes, could see that
something wasn't quite right with her legs. The radiographer wasn't all
that forthcoming. The midwifes tried their best to explain things at
the next appointment, but none had experienced the condition before.
The paediatric consultant, however, was downright thoughtless. Briony
had to go and see him after the diagnosis, and he put a lot of pressure
on for a second scan so we could 'consider a termination'! We were
horrified at the thought, despite the fact that we didn't really know
what talipes was (no one had told us). I wasn't with Briony at the
time, but thankfully her mum was.
We did quite a bit of research on the internet, mainly
to find out what talipes was. There's a few sites we found, the most
useful being www.clubfoot.co.uk and the Yahoo groups nosurgery4clubfoot and clubfoot.
We also spoke to family and friends about it. We were surprised, and
comforted by the fact that some people we knew had been born with the
condition – proof that it certainly was NOT worthy of
We had read a bit about the 'Ponsetti method' for
treating clubfoot, and had decided to pursue getting Heather treated
this way, through the company health scheme. However, we were blessed
with a wonderful Physiotherapist, Steve Wildon at Lancaster, who was
already practicing the Ponsetti method, with excellent results. We've
since found out exactly HOW blessed we are: Many people either don't
have access at all, or have to travel hundreds of miles for the
treatment. Steve has a couple who travel up from Kent once a week,
whereas we've got a half hour trip if the traffic is bad.
Back to Heather's treatment! Steve came over when
Heather was about two hours old to see Heather, and have a short chat
with us both (through a bathroom wall to Briony!). Then Steve and I
took Heather over to the hospital plaster room, where she had here
first casts applied. These casts were a water-cured epoxy bandage
applied over a cotton tube sock and cotton wadding. I think these first
casts were the easiest to apply – it only took three of us to do
Two days later, we were all ready for Briony and
Heather to be discharged to the care of the Midwives at Helme Chase in
Kendal. Unfortunately, Heather had other ideas. Just after the nice
paediatrician came to check them both over, she decided to escape from
her right cast. This was probably a sign of things to come!! The cast
she escaped from has been turned into a little memento, mounted on a
wooden plinth with a little plaque. It makes a change from cross-stitch
samplers or painted plates.
Since we were finally released (probably not the right
word!) to Helme Chase, we've gone back down to Lancaster to see Steve.
Until six weeks of age, Heather had new casts each week.
After the last casts came off, Steve taught us 3
exercises to do with Heather's feet. These we did every nappy change at
first, and gradually got more frequent. She thinks its a game, giggling
and gurgling through them. We usually sing to here whilst we're doing
them, or count.
Steve attended a training symposium in Manchester,
run by Dr Dietz, a colleague of Dr Ponsetti. There they mentioned the
preferred treatment after casting was to perform a tenotomy (cutting
the heal tendon) and wearing a Foot Abduction Brace (FAB) for 23 hours
a day for 3 months. Steve ordered a FAB from a company in Germany, and
this was given to us on October 31st 2002. As the progress
using just exercise was good, not just with us but all Steve's
patients, he does not feel a tenotomy is required. The FAB
is worn just at night, as long as we keep up with the exercises. This
really helps a lot – we get a HUGE grin when it comes off in the
morning and she realisises its off! She takes after her dad, taking a
while to come round and notice things!
One of Adrian's Aunts knitted several clothes for
Heather. One of these was a little sleeping bag, which proved
invaluable. It's virtually impossible to wrap Heather in a blanket when
she's wearing the FAB, and so this means we can keep her a little
warmer, which anyone who's visited the lake district during
winter will appreciate! As she grew, we moved into larger
and larger snuggle sacs. Now she's happily in a bed with a duvet,
it's not such an issue.
Since Heather started walking around her 1st
birthday, we have continued to do the exercises but less
frequently. She's not needed any further treatment, just a check
every few months and new boots as she outgrows the old ones.
The best thing is that to the untrained eye,
Heather is a perfect little toddler! She's usually a really
happy little soul, and gets even the grumpiest teenagers on her side!
After 4 years, the treatment seemed to be over!
Heather no longer had to wear the FAB at night. Since the boots
came off, she's slept better, which is really helpful!
In February 2007, Heather's right foot began to relapse.
Her movement became a little more limited and she was beginning
to walk on the outside of her foot. She was given some special
lilac boots to help correct this. All seemed to be going OK with
these and nightly stretches. However, in September her right foot
started getting worse again. She is now booked for surgery in
early December This will involve cutting the tendon at the rear
of her heal and a tendon transfer at the front of her foot.
She'll be in pot over Christmas. In some ways it means
she'll get more attention than she would, as she's also due to become a
big sister the day before her surgery. Couldn't have been timed
better! She's being very brave about it all.
Heather and her parents would like to extend a huge THANKYOU to Steve, the LRI plaster room staff and the Paediatric Physio department at Westmorland General Hospital!
We would encourage anyone who's discovered their baby is going to be born with talipes to investigate the Ponsetti method!