Talipes Information and Parental Support Group
Taylor's Story
TIPS Newsletter July 1997
Taylor-Louise North
by Taylor’s mum, Nadia
Taylor was born three weeks early after having threatened miscarriage for the first four
months. The labour was an exhausting sixty hours. As soon as they put her on my tummy I
noticed her little feet weren't as they should be but I thought "they can fix
that" although I had never seen or heard of bilateral talipes. In the next few hours
we had seen the paediatrician and the orthopaedic surgeon and were told that Taylor's feet
were CTEV (congenital talipes equinovarus). They would need weekly strapping and at three
months of age they would need to be operated on. Fine, I knew they would be correctable.
So we started with the strapping at two days of age, which of course she protested at. We
could only bath her once a week at which time we had to soak off the strapping.
While all this was going on my mother who was present at the birth died suddenly. A week
or two after the funeral Taylor and I headed of to the RCH. In those days they did both
feet at the one time. It was a long four hours waiting for the surgeon to say we could go
to her side. I nearly cried when I saw my little three month old baby attached to all
these drips and monitors. The amount of morphine they had to give her for the pain was too
much for her body and so for the next twenty-four hours she was fitting and having
hallucinations. They eventually took the morphine line out but had to give her a valium
drip to settle her. After six days we went home, and came back in six weeks to get the
plaster and pins out. Only day surgery this time. We were at the hospital the day Channel
10 were filming the Children's Appeal and of course a camera man came over and had to ask
how this little baby had broken both legs. I felt like saying that she'd been motorbike
riding and had fallen off but thought better of it. After that we went into splints until
six months and then only night ones until ten months. They were starting to look pretty
straight and she started walking almost straight after the splints came off.
When she was 2½ her right foot started to turn in again. Here we go again. Our specialist
wanted to do another release but the head surgeon, on reviewing the case, felt that she
would benefit from an operation that involved cutting the Tibia and possibly the Fibula
and rotating them out as there was a twist somewhere below the knee which was throwing the
foot in. It was at this time that I contacted TIPS to get some info but
unfortunately no one had had to undergo this procedure. In August of '94, after much
soul searching we packed our bags and off we went to hospital, this time leaving Dad home
with a ten month old, who was by the way running by this stage. We live in Frankston so
the trip into Melbourne took an hour each way. This meant not seeing the baby every
day which was very hard as we hadn't been apart before. But Taylor was the main concern.
The surgery wasn't as traumatic this time. Tay's only fear was the needle. Fortunately the
anaesthetist offered to let me hold the mask on Tay until she went to sleep in the outer
room of the theatre. That helped a lot but you never get over the feeling of helplessness
when your child is taken from you. It went well. They rotated her tibia 40 degrees outward
but didn't touch the fibula which meant one less bone to heal. They put a cast on straight
away but had to split it within 12 hours because of swelling. The pain wasn't a problem at
first because they gave her a spinal anaesthetic but although they'd set her up for a
morphine drip they didn't turn it on down in recovery. That meant by the time they
realized she was in pain and they hooked her up she was screaming. I had to get her to
breath like a woman in labour as each spasm hit. It took an hour before the morphine took
control. No child should have to experience that sort of pain.
We were told she would only be in non-weight bearing plaster for six weeks at which stage
day surgery would remove the pins and plaster. Tay was in a wheel-chair, which was a
challenge for us and her kinder class. She is a trooper. After surgery we were upset to
see another lot of plaster, the bone wasn't healing as well as expected. We went through
four changes and one repair, numerous colours and eighteen weeks before the bone was
strong enough to get rid of plaster. From August to the end of December in plaster.
Apparently bone likes to stay where it originates and didn't like being moved.
Well, the operation seems to be a success and Taylor can almost hop as well on her right
foot as she can on her left, which she learnt as a matter of necessity. Her foot still
turns in although not as severely as it did. What have we ahead of us - Her right
foot is very banana shaped which causes her to trip. Bone grafts are on the agenda for
seven years of age. Then depending how that goes more muscle releases. But we've got a
year to recover and find normalcy. Taylor is in grade one this year and has talked the
surgeon into letting her start ballet as long as her self-esteem is kept high as he says
she is going to find it frustrating when she can't do everything that the others do.
Here's hoping.
By the way her little sister doesn't have Taylor's condition, but is knock-kneed.
If anyone is going to have to go through the bone rotation and wants to talk it through
I'd love to chat.
Taylor also has Duane's Syndrome, which means her right eye doesn't turn out past half
way. The optic nerve fibre is getting waylaid. At this stage they can't operate. She has
full vision but it could shut down at anytime which means six monthly visits. She also has
asthma and is clinically hyperactive. All in all quite a complex little child.
Updated April 2000
Last year (March '99) after 16 months on the waiting list we packed our bags and headed
into hospital for shortening and lengthening of the right foot. I'm not sure of the
terminology. Something to do with an osteotomy.
Taylor (8½) went in with a few demands before consenting to the surgery though, such as
no needle before the operation, a mask for the anaesthetic and her choice of food whilst
in there. Reasonable demands I thought. Well the surgery went well and they didn't have to
do a bone graft. What they did do was shorten the bone on the outside of her foot by
taking a wedge out and then pinning it in place. They then lengthened the inside of her
foot by prising the bones apart and pinning hem in place. The operation was successful and
her foot is a lot straighter.
Her confidence levels have gone up. Her sports teacher commented on her improvement in
ground skills and even her ballet teacher has noticed her abilities have improved to the
point that she's done extra dances in the concert.
May I add that this surgery was not done for cosmetic reasons, although that has improved,
it was done because as she gets older there would be weight bearing problems. The only
problem we had in hospital was that because Tay was not intubated (due to the mask) she
vomited for three days. Which means guess who didn't get to choose or even eat her food.
She had to be in non weight bearing plaster for six weeks. She was old enough to handle
the crutches like a pro. We then got the pins out. They had trouble pulling 1 pin out. I
just wish they would say that "yes, it might hurt" to prepare not only the child
but the parent as well. Anyway after 2 or 3 months there was no discernable limp and today
she's ready to take on the world. Next time, Taylor has an even longer list of demands,
including no pins, no vomiting, etc.
There are more operations in the wind but for now, we're going to sit back and relax.
Until August 2000 anyway.
Nadia