The begining of finding diagnosis, treatments, clinicians and surgeons!

Our first meet was with a peadiactric physio therapist from reedly hall.  Jo came to see Cavan in NICU and took pictures and drew up a daily physio sheet to be carried out aswell as making a referal to Booth Hall childrens hospital in Manchester.  Here we then met Ms Naomi Davis and began Ponsetti treatment.

Cavan was by now at home and we had to travel weekly to Manchester so that his legs and feet ( First one and later two) could be forced into a corrective posistion and cast in plaster.  these were very heavy for him and  caused a lot of heartache for everyone during their removal and recasting.  Ponsetti we learned is usually for the management of club foot and that not many places in the UK are properly trained or offered this treatment so we felt blessed that we had arrived here so early.

By November  that year, following xrays and treatment very little was actually being acheived and we were advised to travel to sunderland to meet with another consultant.

By this time we were also still seeing the physio, an occupational therapist, a rehabilitation consultant in manchester then Preston and a peadiatrician in Blackburn.  My husband and I had no choice but to devote (for the time being) our 24/7 attention to the children inorder to meet appointment and schooling needs.  We were recieving little financial help and the costs of transporting Cavan were mounting.

After speaking with the benefits agencies, we were told that help is not available as Cavan is too young.  We then turned to disavility living allowance, seeking assistance meerly for his transporting needs again we were told that he is too young.

Dismayed we continued.

Then in December 2007 we travelled all the way to Sunderland to meet with a consultant named Dr Gavin DeKiewiet.  He is an orthapeadic surgeon.

He told us that Cavan will NOT be able to walk without intense and experimental surgery.  Cavan would need at least 8 years none stop surgery or he would face amputation of between one and three limbs.  He also told us that the place to approach would be in the USA.  He was the first person to tell us how rare Cavan was and how rare a child presents with the amount of congenital (present at birth) limb deficiencies that Cavan has.

We left feeling uneasy about the amputations and wanting to know more about Cavans condition.  How in this day of modern medicine, can amputation be the answer?  Why had he never treated a similar child before?  Why the USA?

We spent the next few weeks floating between Manchester, Pendlebury, Booth Hall, Withington, Preston and blackburn hospitals-Spending countless hours reading books and research materials and trying to find competent surgeons to offer an alternative and who may have operated on similar children.

The first thing we were staggered to find out was that to be born missing your Tibia bone was a 'one in a million' chance.  The next that to be born without an Ulnar was 'One in 25'000'.  We realised then with the help and guidence of a small known lower limb charity-STEPS, that cavan was proving to be a rarity and that we would need to continue reading and pushing forward.  They advised us of a surgeon in Sheffield called Dr Fernandes who has a good reputation for similar cases aswell as other congenital deficiencies.

We arranged with the help of our geneticist from manchester, to see him.

Whilst we waited we spoke to the geneticist for some time.  What caused this?  Did I do it? Was it a medicine that I took?  Did I eat the wrong foods for his growth?  The answer to all of these was NO.  So it must be genetic, right?  Wrong and even more dissapointing was the fact that they can not run any type of test to make sure.  It was explained that unless the abnormal gene to be identified was already known then it can not be tested for.  Neither, contrary to belief, can a blood test be carried out to see if any abnormal genes or DNA just seem out of the ordinary.  Again we were lost, with no answers, no where to turn, no money and no help.

Throughout this STEPS were a huge support and forwarded me anything that they thought may help, including the use of a forum to talk to other parents with lower limb conditions.  But there are none with children the same as Cavan and No one to tell me they know how I feel or what to expect?

Cavan had shown no signs of sitting and was getting his limbs stuck between the bars of the crib and later on the cot.  It was very distressing and very difficult.  We were glad when it was time to visit Sheffield Hospital, maybe they would have some answers?

We were met by dr Fernandes and his team of Ocupational therapists, physio, plastic surgery, nurse specialists and more.  He said that cavan definately had the Tibias missing in both legs and the ulnar missing in his arm with the other arm the bones were fused meaning that cavan would not ever be able to rotate his wrist, causing problems with feeding and toileting.  Again he had not met a similar child and told us how very rare he was and that althought he was willing to try surgery, he would need to liase and talk to other surgeons in USA and Germany.

He ordered Special MRI and Xrays to be repeated on Cavan in the meantime and to return to him later this year.

Although we were happy to have a diagnosis, we were still bitterly upset at the talk of ampuatation and that still we could not seem to meet a doctor that had treated a similar child.  We were also concerned that if he was able to perform any surgery why did he need to consult with others.  So the research to the USA and Germany began.

Just after this point we were kindly invited by STEPS to attend a Research conference in Southampton about children who could wear prosthetics and their views to their 'False limbs'.  They also very kindly assisted us with the costs for attending as understandably financial matters were now tight indeed.  This event changed my husband and I for ever.  Although we did not meet another Cavan, we met children and parents with various situations, that amazed us with an ability of determination and levels of 'normality'.  We suddenly knew and came to the realisation that whatever the outcome is to be for cavan that it will be okay and that we will all adapt.  For that I will always thank them.

 One year on...

Two weeks before Cavans first bithday- he decides to show us that he can sit for a while, crawl and play however he likes after all.  By using the toes of his left leg to push and the elbow of his right arm- he amazes us all.

This started us thinking seriously about the paths we would take for surgery.

We had by now done some extensive research and had learned of a doctor in the USA, Dr John Herzenberg who was a renown childrens orthapeadic sugeon at Sinai hospital of Baltimore.  We made conatct to see if may be able to help and only by way of the kind nature of people fundraising we managed to take cavan to see him in August this year.

Cavan & Dr Herzenberg.  August 2008

We were told that cavan may be able to save his lower left leg if we either had surgery in the states or found another doctor. However his right leg needs to be amputated soon.  the amputation, like any of course can be done in the UK.  For his left leg he will need several operations involving dislocating, breaking, realigning and growing bone, using a supported frame.  The surgeon would need to be Illizarov trained.  Although surgeons who have used illizarov are quite easy to find the surgery would be new for most of them.

As for his upper limbs, it was left undecided untill we can address his toileting and feeding independace at about the age of two or three years.  A better idea will be had by then. 

Again another dilema.  We were told that it would cost $30'000 for each operation and an extensive stay in the states over a period of years.  However we were told of a Dr Weber in Germany who should also be able to help and maybe even perform different surgery to allow cavan more use of the ankle following reconstruction.

We came home somewhat dazed and bewildered but positive and ready to fight to get to germany. 

We have recently discovered that Dr Weber may have relocated and now back to seeking alternatives or finding him?

So Its now November 2008 and we have exhausted all possible leads to Dr Weber without success.  We are now faced with total uncertainty as to whom to turn too.  We did not want to give this up easily but as time goes on and the lists are completed, I dont see that we have an option.  Meanwhile we are still trying to find something suitable for cavan to stand up in as he is now 15 months old and only crawling. 

We have been struggling to keep him warm as his feet and one of his arms are constantly exposed, and as winter draws nearer he is feeling the cold.  So we seem to fight a cold then another one starts,  Clothing is still hard to find of any suitability as at this time of year they are too thick for him to get on so we layer him up the best way we can.

We have also had two orthotics made to help him learn to stand prior to any surgery or amputation.

FEB 2009

Cavans first time in surgery in sheffield.  We were all very nervous before hand and settled cavan as best we could of course he wasnt all sure what was going on but it stops you worrying none the less.

The amputation of his right leg and the seperation of his two fingers on his only hand.

The operation went well and all in all was not as bad as the anticipation.  Cavan had to wear a half body plaster cast for some weeks but still managed to crawl around.  His hand was bandaged too so he needed a lot of care and support.

The biggest shock was the first sight of the amputation but soon we adapted.  We learned to bandage his stump end and maintain its shape and the scar is now minimal and very neat - thanks to the surgeon.

An appointment with a prothetist took some time but eventually we met with Dr Lindsay in Birmingham and Andrew Sharp.  They are now dealing with cavans rehabilitation and doing a vdery good job alongside the orthatist.

Cavan is now about to turn two and in the past few months since surgery he has coped very well.  He is now able to stand and with the help of a walking frame he is beginning to walk in his own way.

We have decided to leave his right arm alone for now as he is learning to manage with it more and more and we cannot help but concern ourselves as to what would would happen if we operated.  He is still due a lot more surgery on his left ankle in order for him to walk.  He is currently walking on athe side of a twisted foot and the outer ankle bone, with his foot in the posistion of 6 o'clock.

We hope to start the next surgery in the winter.

A  NEW YEAR 2010....

As the new year unfolds we are ever mindfull that Cavan is due more surgery starting January 14th.  We visited Sheffield childrens hospital over the xmas festivities to see all concerned ( physio, occupational therapy, anaesatist, surgeon, general health etc) and recieved all the information we need.

Cavan is to have surgery to correct the deformity in his left ankle in order that hopefully he may walk and be able to continue his life in a better way.

In laymans terms the surgeon hopes to break the ankle and then fit a frame which will twist his foot over a period of months.  He is to have at leat 5 operations between jan-may.  After this he will be placed in a plaster cast for some time.

If our feet are said to face forward at zero degrees then the amount cavans needs correcting is 65 percent.

The surgeon says that he has never done a correction this severe and that he may need to break cavans ankle again as bones at this age heal so quickly.

No one is too certain what will prevail after this we all hope that it saves another need for amputation!!

We have been lent a wheelchair from the nhs as cavan will need to have his legs kept upright afterwards, although the wheelchair is too big for him- we are considering using cavansfund to purchase a better suited one but are waiting for more information before we make a decision.  Many thanks to all who keep in touch and support us- wish him luck x

I will uopdate soon ....