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Katie's Story
Katie was born at 10.59 am on Tuesday 18th January 1994, at Williamstown Hospital, Melbourne. I had absolutely no idea that my baby had Talipes, or even what it was.. I had a 22 hour (induced) Labour, and then when she went into fetal distress, her head was stuck in my pelvis, she was presenting posterior, I had an emergency Caesarian for which I had a general anesthetic (too late for a spinal). When I woke up, 2 hrs later, I was introduced to the most precious little person I had ever met My Katie. My mother waited a bit, then said, um, darling, did they tell you about her little foot? well, they hadn't..and didn't actually mention it till a couple of days later! I couldn't believe that they had done that! left it to my poor mother to tell me her and dad had been up all day and night with me, I didn't even look at her foot until the next day, mum had told me that the Dr said it was a small problem that can be fixed, that was enough for me for the time being. I just thought, Oh, ok... I don't think it had even sunk in that there was a problem. I was just glad to have her in my arms at last.
When she was 3 wks old, we had our first appointment at the Royal Children's Hospital in Melbourne (only a 20 min drive away) with Mr. Mark O'Sullivan. It was at this appointment that I was first told that she would definitely require surgery. Apparently most cases of Talipes are either soft tissue OR bone, Katie's is BOTH.
We had weekly plaster changes, which then went to fortnightly for a while, then at 14 wks old, Dr.Mark cut and stretched her Achilles tendon, then she had casts, then AFO's for a while don't remember the names for them, But I remember one of them had a leather strap going from near her big toe to the top of the AFO, and I was supposed to tighten the strap a little each time to a tighter hole, to pull her foot into position, but her foot kept turning in again, it ended up that I couldn't tighten it, in fact it was getting hard to do up at all in the end. Then at 6.5 months old, Dr. Mark did a complete foot reconstruction, he cut from her toes, right around her foot, around the back to the other side of her toes, (still has the scars) this was not as successful as they had hoped, and he had to cut more than he had thought, as he said it was worse than he first thought. This op was hell! my baby was in absolute agony!, I walked the corridors of the children's hospital in Melbourne for hours, with her in her pram, she refused to sleep in the cot, thank god she was breastfed too that helped a great deal to help calm her a little (also less fasting before surgery), the hospital staff was wonderful when it came to support and pain meds, but it was sheer hell for my little baby girl.
At 7 months old, they had to put her under anesthetic again, to change the plaster and dressings, and manipulate her foot. I remember this one ever so clearly as they would not let me go further with her than the pre op, and as they were carrying my baby away, she was over the tech's shoulder crying, stretching out her arms to me crying mumma, mumma, mumma.... (god, that's got me started...) This I will never forget...........
She ended up getting a wound infection at the back of her foot at about 8 months old and had to be treated with a high dose of very strong antibiotics, so much so, that the pharmacist rang the surgeon to check the strength and dosage! More AFO's for a while, then only at night for another while. I don't remember how long each time.
She went fine for a while, walked at 13 months, (weaned off booby at 12.5 months)
About a year later we noticed that her foot seemed to be turning in again. It took me quite some time to get an appointment for the orthopedic surgeon, (I had re-married by this time too, I had been a single mum from 10 wks pregnant) the Dr. decided that she had to have further surgery, he was considering something called an 'alisarov frame' (sp?) He decided against this one, Instead, he decided to do a 'post release tendon transfer', this was done at 3 yrs 9months old (after only 8 - 9 months on the public waiting list), he was to take the tendons from the top of her foot, but he said they were too badly scarred, so he took the tendons from the arch of her foot, and transferred them sort of through her foot to the other side, this was supposed to pull her foot back into position, unfortunately it didn't work. More AFO's.... she had one that had a hinge at the ankle.
Well, her foot just seemed to keep pulling inwards more and more, till eventually it was tripping her up all the time, she was falling all the time, could not put any weight on that foot at all and had a small limp, before long, we also noticed that her leg had grown twisted from her knee to her ankle, Dr. Mark decided that she needed either of 2 surgeries, one called a 'Distal Tibial Rotational Osteotomy' and perhaps a further Osteotomy on her foot...he decided that she would get more benefit from the tibia op, so he booked her in!
19 months later, we finally got a surgery date! 16th November 2000. She was now 6yrs 10mos old. And boy was this op a whopper..... Dr. Mark was on leave, so we had another surgeon, he had to cut and then break both her Tibia and her Fibula and then rotate the leg till straight, then he screwed a steel plate onto her Tibia to keep it in position, then plaster was applied, well, she was in absolute agony...they had her on Morphine, panadol & Codeine for the pain, then had to give her valium as well, as they suspected she was having muscle spasms.... the sight of her brought a lot of people to tears, as my bright bubbly girl was pale, very, very quiet, and just had a look of extreme pain about her... she also suffered a lot from severe wind pain and constipation, she had to be given an enema to be able to use her bowels, this helped a lot! 7 days after her surgery (2 days after going home), I had to take her back into the hospital through casualty due to unceasing severe pain, she was re-admitted as it was discovered that she had a wound infection and large blisters on both sides of her lower leg...she was put back under anesthetic first thing the next morning, they cut off both the blisters and dressed them, cleaned up the wound, then re-applied plaster. This made a HUGE difference....she had been screaming all night the night b4, the only pain relief they could give her was pain stop.... to make it worse, we were squashed into a 4 bed ward with 4 beds already in it....(we made 5!) the orthopedic ward was full so we were in a general surgeries ward
Katie was in a wheel chair for a while after that as she wasn't allowed to walk or put any weight on her leg at all.....after she got out of the wheelchair she was in a sort of walking frame with wheels, called a rollator and had started having physiotherapy, her school was great, and I can't praise her teachers enough, they were wonderful!, they helped her to stay independent, but provided help when she needed it.... (not many stairs in her school either) She finished the school year in the wheelchair, and started the new year on the rollator.
The physio's at RCH Melbourne are wonderful, she was walking with a pronounced limp b4, now she walks just like anyone else She was given exercises to do everyday, and they worked a treat! She now has a lot more strength in the leg than she has ever had.
In the Orthotics dept. they made up a shoe insert. Katie has a 2cm difference in the length of her leg, and a large difference in the size of her feet, (2.5 - 3 sizes), and this orthotic is a shoe filler as well as adding height....so for the first time in years, she can wear the same size shoe on both feet! (also other kids don't notice as much)
A couple of months ago, I got a call from the hospital on a Tuesday morning, they said to bring her in at 7am the following morning to have the metal work removed from her leg......Katie's front wound had developed Keloid scarring which had made a nasty scar Physio had been treating with silicone gel which she developed an irritation to, then Hypafix, Dr. Mark also removed the Keloid scars and the scar now looks a lot better, still a bit lumpy though... still using the Hypafix though as they said it is still an active scar.
Apparently Dr. Mark has her down in his notes for a further Osteotomy on her foot in around 18 months....this will also be a doozy...he has to cut a wedge of bone from one side of her foot, and a cut on the other side of her foot to straighten it...it is still 'banana' shaped, so we will see next month whether or not he still decides to do this one...her foot turns in and tucks under still, but it's a lot better than it was as a baby.....that I am thankful for.
Her self confidence is a lot better as well now, as when she was tripping all the time, she had developed quite low self esteem, something that really worried me... she now runs around with the other kids...(chasing the boys around too...hehehe but I'm told "just a friend mum, not a boyfriend...lol)
On the 26th November 2001(1 year & 10 days after the Osteotomy), we went to see the Dr., Dr Mark was called into theatre, so we saw one of his sidekicks again. They are happy with her little foot so far and believe that further surgery at this stage will only hamper her, and most likely only make her foot stiff, so shall let things be for now. but do believe that she will most likely need more surgery in the future.
Well, Katie is on the waiting list again for further surgery. This time they are going to cut & stretch the tendons in the arch of her foot as well as the Achilles tendon. We have been told that the waiting list is 6 - 12 months, so that brings us to either the end of 2002 or middle of 2003, so here's hoping it won't be too long.
March 27th 2003
well, so far we have heard nothing from the hospital re: Katie's surgery, we are currently in Ireland (republic) for approximately a year. we spent a very COLD winter here, Katie's foot gave her a lot of trouble, i suspect it is the beginings of arthritis, with all the surgeries that she's had done so far, it wouldn't surprise me. although, maybe it is just the fact of the tendons being too tight. Who knows! perhaps we shall find out after she finally has this next surgery. She likes being here in ireland, but says she can't wait to go HOME!!! Neither can i for that matter!!!! hehehe what can i say, true blue Aussies!
well, that's all for now.
take care all, till the next instalment. Luv Cat.
well, we came home from Ireland on 3rd September, my Hubby, Danny is still there at this stage & will be for a few more months. We are still waiting to see when her surgery will be, apparently the hospital tried to contact me back in May, i didn't know. I really hope we haven't missed her spot! will keep you posted!
November 6th 2003
Well, Katie had her long awaited surgery yesterday Nov 5th. we had a phone call last tuesday morning to ask if she was well for it, so i said yep, book her in!
He was initially going to lengthen the achilies tendon & some in the arch of her foot, but when he went in, he lengthened the achilies, but it didn't move it at all, so he ended up having to 'pop' her joint, i think is the heel joint, not quite sure what he meant by that, but he said that then it moved beautifully. He also cut her plantar fascia, which is muscle in the arch of the foot.
She had a self regulated morphine infusion, but she didn't use it at all, she said she didn't need it! Katie seems to have a relatively high pain tolerance. Luckily she handles anesthesia very well (like me!)too. She slept very well, ended up having 2 glasses of water then a cheese sandwich, then another glass of water, then another sandwich...LOL, she was starving. She's now in a wheelchair once again & has to keep her leg elevated above her heart all the time.
Only prob so far is that she can't feel her middle 3 toes, he seems a little concerned as a nerve may have been damaged during surgery, but he thinks is more likely to be a temporary thing due to all the stretching they did & the feeling will come back within about 2 weeks.
While we were waiting, the registrar came to do his pre-op checks, next thing, her surgeon came in himself with the registrar behind him to check himself...they were looking at her hips & back, seems that the leg difference is quite noticable, & will need to be fixed in the future. What Mark (her surgeon) told me is that he will either need to lengthen that leg or at the appropriate time, stop the other one (good leg) from growing! I'm more inclined to tell him to leave her 'good' leg alone!!!!! As far as i know, leg lengthening is done with an 'Alisarov' frame. That would be quite a big, painful op with a long recovery time!
It kind of freaked me out him telling me this when she hadn't even had the op we were there for yet! He also said he will need to start doing some 'CAT scans' soon, i'm really not sure why he would do CAT scans though. Perhaps to check there is no damage to her spine? I really don't know. I won't be able to ask him as he has gone on compasionate leave as there is an illness in his family, apparently his wife. Mark is a wonderful Doctor & i have full confidance in him!
He has been Katie's surgeon since she was 3 weeks old, she turns 10 in January, so that's quite some time. She also trusts him fully & will sometimes not even talk to another doc...LOL.
Katie is on Paracetamol & Codeine if she needs it, She handles the wheelchair very well too, which is a relief!
that's all for now, till the next instalment
luv Cat..
13th November 2003
Katie was in so much pain tuesday night i ended up taking her to emergency at the childrens hosp, they decided that she may have an infection in her foot....
We had to stay in emergency dept that night as here were no beds in the ward, at about 7.30am she was transferred to the ortho ward. Saw the orthopaedic fellow, he wanted to see what it would do, by then
she had a fever. The put her on IV antibiotics tues night.
waited all wednesday, 9pm, were told she's def going to theatre that night...11pm was told 3 emergencey cases, she's getting done tomorrow instead. so at least she got to eat! she'd been fasted since 1.40am! so she could eat till 1am, she was relieved.
Thursday morning 11.30am she went into theatre, she was by this time in agony despite the panadol & codeine!
Doc came to speak to me after, her foot is severely infected in every place they operated on! they're surprised it's so bad tho as it was only a week since her surgery. They cleaned the wounds up, but didn't stitch it as they want all the infection to come out. he has a dressing on it & the back of her cast on with bandages around it.
she's till in pain & they've ordered morphene if she needs it, which she hasn't so far.
they need to take another look on Saturday & plastic surgeons will also look at it, as she may need a skin graft on the back of her foot! then she needs to go back to theatre again on Monday! all up, we will be here at least another week!
They say there's always a 1% chance of infection, never expected it to happen tho! they said is a higher risk if there's been previous infections in the spot & also the amount of scar tissue is a factor too!
Unfortunately surgery was unavoidable with Katie's foot, they cast it for as long as they could as a baby, then it just wouldn't move anymore...so they kept it cast to keep it mobile... till surgery.
here they do try to avoid surgery if possible, but they say that sometimes it can't be avoided. I wish with all my heart that things could have been different!
This is twice as difficult for us at the moment as my husband is still in Ireland, so i'm feeling pretty alone right now, i went out near the lifts today & cried my eyes out! Mum & Dad are great, but it's just not the same! It's hard for my son Jason too, as neither mummy or Daddy are there, but he's happy to be with Nanny & Opa though.
I hope all is well with your beautiful children, Luv Cat.
I am now happy to report that so far, Katie is doing very well, she is mostly pain free & moving around quite nicely. What they did is took a flap of skin & an artery & a vein from her right groin & transplanted that to the rear & inside of her left foot to replace the skin they had to cut away. Her Achilies Tendon is damaged & may need repair in the future, that we will have to see about & there is still the difference in the lenths of her legs that needs to be fixed, that is in the future. But for now, they are quite happy with how things have gone, My poor baby ended up going into theatre 5 times in 19 days! that makes a total of 13 anaesthetics for her in less than 10 years! Luckily she handles them very well & doesn't get sick. The orthopaedic surgeons are going to put her under again in around January (the 6 week mark after the last one) to remove her plaster & clean her foot up, have her fitted fro an AFO (ankle foot orthosis, sometimes called a 'brace' or 'splint'). They decided to do this under anaesthetic as she was getting so distressed everytime they had to do anything. The infection she had was a 'Staph' infection, of which type i don't know, but when we see the orthopaedic surgeon again, i will ask then so i can then do a little research on the net. It was quite a severe infection though & hit very quickly. It did come from the operating theatre, but i know that can happen anywhere & the scar tissue was a big factor. One thing i never knew is that caffeine inhibits healing! So she's on a caffeine free 'diet' from just over 2 weeks ago & for another 3 weeks or so, till around christmas i think. Hoisting the wheelchair in & out of the car is killin' my back & shoulder though, which i have problems with enough as it is! Luv to all, Cat. Jan 2004 Katie had the plaster changed under anesthetic, they fitted her for her AFO, that should be ready in 2 weeks.... got the AFO, they will cut a hinge in it in 3 months. Katie's having trouble putting any weight on it at all, she has the crutches to help though, she'll get used to it in no time! Monday 19th April 2004 went to the hospital today, they cut the hinge in her AFO after we waited for hours for the doc in orthopaedics...they were very busy today as they are most days. I was also told that doctor Mark's wife passed away, so that was very sad. I feel for him & his family. He will no doubt be on compassionate leave for a while longer. We miss him, but thankfully the orthopaedic fellow is great surgeoon too. It took her a few days to get used to having the hinge there, they have now told us that there is permanent damage to her achilies tendon, it seems it cannot be repaired. he has said that the stiffness she has when trying to point her toes will not go away. He also said that she will most likely need a 'rocker bottom' on her lft shoe to help with her stepping.....i am keen to not give up that easily, try some physio at least! if Sharon says the same, then so be it, but i feel we have to at least try! It hurts her to put any weight on her foot without the AFO still. hopefully that will improve...they still say she has about another 8 - 10 years in the AFO :-( Oh well at least she can walk! & she still has her foot! I keep reminding her & myself, WE ARE LUCKY The other bit of news on the family front... we are now a sole parent family as danny & I have no separated permanently. He's staying there, us here. So be it. We will survive as we always have. My children are most important & they do NOT want to go back to Ireland. Katie has also had some contact with her biological dad Peter (PK) she's enjoyed that too he turns 50 this year...so perhaps he's feeling that! but i'm keen for the two of them to build some kind of friendship if nothing else. Katie needs to have some tests done on her leg bones...a bone growth test & a CT scan. This will be in late October this year. (just before Beltaine) then they will be looking at the next step...when it will be the right time to either stop the good leg from growing or lengthen the bad one. will keep you all posted. Luv Cat, Katie & Jason. 13th February 2005 Well, Katie had the tests done, it seems there is 2.1cm over all difference in the length of her legs from Hip to heel. they said that 2cm or less they won't do anything, but 2.5cm or greater they will. So the next tests are sceduled for 18th April 2005. Katie still has the AFO on her foot, she can however walk without it without too much pain. She is to wear it 24/7 except for swimming or bathing still until she has stopped growing then who knows what then. Katie is doing very well at school (grade 6), she just got glasses recently & her bio dad PK sent me the money to pay for them to help me out as i am still on the sole parents pension. Only new thing for me is apart from writing my car off a few weeks ago i have a new love in my life...Andrew. Jason is now in grade 1 & doing ok. He's still a little rascal & gives Katie heaps of grief...LOL but i guess that's what little brothers are for? lol She's non too impressed anyway. Katie is developing beautifully into quite the young lady! i'm enjoying watching her blossom from a little girl into a young lady. well that's about it for now, shall let you all know when i know more. love & blesings, Cat Katie & Jason. 10 February, 2006 Well, i just can't believe it!! my little 'baby' has started High School!!! She's becoming so very grown up before my very eyes. 12 years old already, no boyfriends as yet... she say's that she's not interested in boys yet (hehe give her a year??) as for her foot, well...it's giving her some trouble still, need to make an appointment to see Mark again so that he can measure the lengths again, she's due also for another CT scan & bone age x-ray to see how it's all going. Last time it came out that there wasn't a great deal of difference in the overall length, but my mum made her some school trousers & had to make one leg shorter than the other, to compensate... also her hips seem to be at different levels. I honestly think that if he says again this time that there's not enough difference to do anything, i want her to start seeing a Physio again! I'm concerned about her spinal health the way her legs & hips are developing. NOT happy at all with the way things are looking. However, i try to not let her see just how concerned i am. Although, if she does read this at any time, she will certainly know... but i guess she will once i speak to the Ortho anyway. I'm now working part time in a real estate & am doing a real estate course, finally i get to have a career, i think i can be a good role model for my children in doing so as well, which is important to me... they can see that although mum was doing it tough, i got up & got going & did something about it, not give up! Hopefully they will see this & do likewise when life throws them a blow. Not much else to report i guess, not until after she has her next appointment with the Ortho anyhow. til then, adios! 28th September 2006 Well, well, well..... I am working full time now, &.... Katie has her first boyfriend!! He's about the same age as her... 12. She will be 13 in January 2007, i don't know when Raymond's birthday is. Katie say's that he's a quiet boy & a nice boy. She'd like him to meet Drew & i, so that's nice. It's kind of freaky thinking of my baby girl having a boyfriend! She now has a 'riser' in her shoes, just to even out her leg lengths a little. She is back at the Hospital for further x-rays & to see Mark again. Here's hoping for no more surgery!! by for now, Cat. 17 Febuary 2008 Hello, this is Katie here. My mum and I have decided that it is my turn to look after this page, seeing as I am 14, so lets get started! First of all, I will cap on what has happend so far; I am no longer going out with raymond, my mum has forgotten to mention my BEST FRIEND shani, who i have been friends with for two years now, and my mum is no longer going out with drew. I am now a big nightwish fan, Nightwish being just the BEST finnish metal band in the world, and also a proud Emppuholic, Emppu being the best guitarist in the world, and also nightwish's guitarist. I am still wearing the riser, which helps my back and helps with any foot pains I get. My foot is going well so far, but still need to wait for next doctor visit for conformation. I will try to keep this page as updated as possible, so goodbye! February 2014 Time for a bit of an update. Katie is now 20 years old, She graduated from Secondary School, went to University for 3 years, decided it wasn't for her at the moment and is now looking for work. She lives with her closest friend Tazi in semi-rural QLD (Gold Coast) whilst Jason & I live in North Brisbane. Her foot still gives her some trouble. She is unable to stand or walk for long periods of time and her foot tends to ache when it's cold & damp. I will try to re-visit this page when I can.
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