Skye's story

 

We started writing about Skye's story in October 2016 whilst waiting with bated breath for some

possible news about a new direction.

 

2013 (Age 10 - born 23rd January 2003)

 

Skye was ten when our family chiropractor; Ronald Scott from Lower Hutt Chiropractic Centre, spoke

up when he thought there was something wrong. Within six weeks he told me she was progressing

rapidly and I should do something about it quickly.

 

We went to our local GP who referred us to a specialist (surgeon); Robert Rowan in Wellington.  He reviewed her and told us her curves were 30T/26L – well now the research began.  What does 30T/26L mean, where is thoracic, where is lumbar?

What on earth is a risser scale? We spent hours researching the Internet just to find reams and reams of information, all of it seemed to be contradictory – so where to start.  Hence the birth of this website :-).

 

We started doing everything in our power to stop the inevitable (specialist words) fusion of the spine.  We met an amazing orthotic lady; Lauren, from Orthotics Wellington who built a Boston Brace for her – Skye settled into life in a brace really well. 

 

2014 (Age 11)

 

Whilst Skye was settling into her brace, we reached out to other families to see what they were doing and how they were coping, this is where we learnt about a gentleman in Sydney called Larry Cohen from Postural Therapy (Upright care).  We arranged to go across to Sydney from New Zealand and spend a full week with him understanding the Schroth method of exercise, to see whether exercise would assist with her curvature.

 

After a week with Larry (a truly amazing gentleman) Skye was 2cm taller and had all the tools she needed to perform the Schroth method herself at home – 20 minutes per night.   Seeing the straightening of the spine through exercise spurred us on that we were on the right path to delay the inevitable as long as possible hoping that another method or procedure would come to being.

 

Larry has access to an EOS Xray machine, which has a much lower dose than that of normal Xray machines, so he did an in brace and out of brace Xray.  This showed that there was not much difference between the two, Larry then made a call to Sydney Childrens Hospital to see whether they could assist in reducing her curvature through bracing.

 

We were introduced to Wayne at Orthotics in Sydney Childrens Hospital, he created a new brace (with the support of Lauren (Orthotics Wellington) back home), called a Cheneau Rigo brace.  We went back three weeks later to Sydney to pick it up.  This brought her increasing curves down from then 45T/37L to a very respectable 34T/25L.  Awesome news, I'll be forever grateful for the kindness and skill of these amazing gentlemen in Sydney, who bought us the time we so desperately needed whilst researching other solutions.

 

2015 (Age 12)

 

Whilst in her new brace, Skye (being a teenager) wasn’t doing the Schroth exercises each evening; there were too

many tears and arguments so I decided on getting extra help.  We called on the assistance of Iris from Studio 11

pilates in Karori, Wellington, who sees Skye twice a week, and there she performs her Schroth exercises with the

assistance of Iris and remote assistance from Larry when needed.

 

Another amazing therapy we found was the Raindrop massage.  One of our good friends who is a masseuse; Kirstie

from Spa Express in Wellington became a practitioner in her own time to help with our journey.  Not everyone has

had good results with this, but Skye adores these massages, they are very intense and before my eyes I see Skye’s

back straighten to an arrow.  She has these once a month.

 

 

 

 

 

 

 

 

 

 

During this year we went back to Sydney for more physio with Larry, and also check ups with Wayne and adjustments to the brace.

 

2016 (Age 13)

 

In September 2016 (2 years in brace), we went back to Sydney for our 6 monthly check up, she had been in her Cheneau Rigo for nearly a year.  Her EOS xrays showed that her curvature (out of brace for 12 hours) had increased to 53T/36L – devastating news.   Our journey was at a cross roads – what to do next.

 

The first thing was to request a new brace by Wayne at Sydney Childrens, he agreed and we travelled back to Sydney and picked up the new brace which brought her curves from 53T/36L to 36T/27L :-).

 

We now know that her curves are going to increase no matter what we do.  It is estimated that above 50 degrees, the curves will grow 1 degree per year.  Meaning that even if we did nothing, at 40 years old she’d have a thoracic curve of 80+ degrees.

 

So, the research starts again.  We reached out to Dr Betz in New York – the founder of a new procedure called tethering (VBT).  He wrote back saying that Skye, due to her immaturity (risser 0) was perfect for the procedure however the costs are astronomical.  So, we needed to find someone to do tethering closer to home, or get accepted to Shriners Childrens Hospital in Philadelphia.  Shriners are apparently the best in the world for scoliosis treatments, however, you need to get accepted and obviously have it done in the US.  This to us would be a great solution, however, follow on care to us would be an issue being in New Zealand, so we reached out closer to home.

 

Through our wonderful network of families we found a surgeon at Starship Children’s in Auckland; Dr John Ferguson, who has performed a number of very successful VBT procedures and we believe he is assisting Australia with their first ones.  Hopefully John will assess Skye’s case and agree to take her on.  This would mean that we could keep the surgery in New Zealand, assist other families going through this awful journey, and help Skye get local life long care.

 

As a bit of background, Skye’s incredibly sporty, in 1st 11 soccer, swims 5km a week and plays netball twice a week.  The video of a beautiful young girl (after having VBT with John) doing a gymnastics floor routine showed Skye that a sporty life beyond VBT was possible and she has accepted and agreed to go down this path should it be absolutely necessary.  So, it is with new found energy that I write that it looks like Skye will have to have surgery after all.

 

Even though our crossroads will take our little family down a certain path, to all those families out there, remember if you have time on your side then things can change.  Grasp as much time as possible through other therapies. New technology may come about, a cure may be found.  It took two years of waiting, researching and working hard, for our family to find a solution that we will be comfortable with.  Fusion is perfectly fine for some families, and the surgeons absolutely amazing, if fusion is our final answer then so be it, but we’ve been lucky enough to hopefully have found an interim step at this young age.

 

A massive thank you for everyone involved in our story to date, from the beautiful families we have met along the way, to the equally lovely spinal specialists and orthotics teams for their amazing care, knowledge and investment.

 

Well, it's Tuesday 4th October, we just had a call from John Ferguson's rooms with an invitation to fly to Auckland next Tuesday to meet with him.  Our new path begins.....

 

We flew from Wellington to Auckland and met with Mr John Ferguson & Crista (his private nurse), what an amazing team, they saw us and discussed Skye's case with us.  He mentioned she would be perfect for VBT and agreed that even though it was still in an experimental stage it would be great for Skye.  Unfortunately in New Zealand there is no private insurance (that we know of) so John agreed to see us as part of the national health service at Starship Childrens Hospital in Auckland.  

 

The next step is to go up for a clinic at the hospital in December 2016, and then go on the wait list for surgery early in the New Year.  Yay - we have a plan.  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

One thing that Mr Ferguson did state was that Skye did not need to wear her brace any longer.  Ouch..... she has taken him literally and is no longer in her brace :-(.  

 

We were called back to the hospital in mid December 16 for a clinic, the xray showed hideous progression of her curvature, and she is sitting about 60 degrees thoracic.  Mr Ferguson (with assistance from Steve Evans) has agreed to VBT in late February 2017 :-) YAY oh YAY.

 

Upon returning from Auckland, I emailed a Mr Phillip Insull, a kiwi who has been working in the UK performing VBT for the past few years, he is back in New Zealand and has agreed to assist Mr Ferguson with the surgery for Skye :-).  Words cannot express my thanks to the extended assistance around us right now.

 

2017 (Age 14)

 

January

For Skye's fourteenth birthday and with surgery looming, I decided that she needed to go into the operation with amazing confidence and to know how beautiful she is, whether she has surgery or not.  In Wellington there is a company called Project Bloom which gives young girls the opportunity to be a model for a day - Skye and her bestie went for the photoshoot and they came away with the most beautiful pictures.

 

March

We are now in March and just heard word that the tentative date of 5th April for Skye's operation has been postponed, but the good news is that we have a date of Thursday 25th May.

 

Another change, this time confirmed in writing and accepted by us :-).  The dates are:

 

-  Friday 12th May for a pre-operation clinic checkup

-  Wednesday 17th May - to be on the ward by 2pm

-  Thursday 18th May - Operation

 

May 2017

 

The call no-one ever wants to take.  Starship Hospital called today (May 4th) and cancelled Skye's

operation for the third time :-(.

 

My emotions are of anger, disbelief, frustration and more importantly sadness for my darling girl.  

The reason given was that the 'hardware' that is coming in from the States wont be here in time for the

18th May.   We are still going up next Friday for a pre-surgery clinic, I need to get my fight back - it seems to have disappeared :-(.

 

Today (Friday 12th May) we flew to Starship in Auckland, to meet with Mr Ferguson and have new Xrays done.  I'm feeling broken, as her progression has taken her beyond a conservative surgeons view, thus Mr Ferguson will not perform the surgery alone.  He has agreed to reach out further to Dr Betz in New York and Philip Insull in Auckland to seek second / third opinions.  Her thoracic curve has now reached 68.5 degrees, and her lumbar has increased dramatically, so she may possibly need a double tether should VBT be even an option.  Obviously we are feeling pretty broken at the moment.

 

June 2017

 

Last week we heard from John Ferguson that he has reached out to Dr Randall Betz in New York and 

potentially Dr Betz is coming down to New Zealand to assist in Skye's surgery.  Unbelievably amazing news,

I feel like we have won Lotto, Dr Betz is the world renowned pioneer of spinal surgery and 'inventor' of VBT :-).

 

Unfortunately there are no dates planned as yet.  So we are waiting with bated breath to hear any news.

 

Whilst waiting for a date, I couldnt sit and do nothing, so yesterday (7th June) Skye & I flew to Auckland to

finally meet Dr Philip Insull in person.  Philip was so kind and informative when we were looking at VBT 

options close to home late last year, and it was an absolute pleasure to meet him yesterday.  John Ferguson

also reaches out to him in specific cases, thus I thought it best to meet in person rather than Philip having to

just rely on Xrays. He was very thorough in his examination and again thought Skye was a great candidate for

VBT, however, he does not take on younger patients due to his facilities not having specific pediatric care but

he can assist other surgeons when required.

 

Upon my return from seeing Philip, I emailed John to let him know that we had been.  He was so pleased that we had gotten a second opinion, and in the same breath asked whether Wednesday 5th July would work for us, with himself (John Ferguson) & Dr Philip Insull performing the operation and Dr Randall Betz remotely from New York.  (For more detail please see Skye's blog - here).

 

YAY oh YAY we have a date !!!  It's three weeks away - holy moly !!!

 

We had an awesome get together with the other scoli families this weekend to celebrate Scoliosis Awareness Month, it is always amazing to see how far these girls have come and the rapport that is instant between them.  Thank you to all of you for making the effort to be there (especially the long distances that some of you came), it's a great way of showing our kiddiwinks that they are not alone.

 

July 2017

 

Well, it's July 1st, it now seems very real.   Yesterday, I finished at work for a good few weeks (as my surgery is now backed up behind Skye's) - what a beautiful bunch of people I have the honour to work with - thank you from the bottom of my heart for all your support.   We also posted our event on the VBT Supporters group - now it's real, everyone knows that this is happening - eeek.

 

I think now is the time to move across to the surgery blog for a wee while.  See you there.

 

August 2017

 

As you might have read on the blog, we did go to Starship for Skye's surgery, unfortunately our surgeon was sick on the day and the surgery did not go ahead.  However, this wasnt the entire story, basically they found a congenital heart defect in Skye and would not perform the surgery even if Mr Ferguson was well.  

 

When did I become grown up enough to write about Open Heart Bypass Surgery I'll never know, but that is what we have to deal with now.   They found on the day of the cancelled surgery that Skye had an abnormal heart ECG, and then an abnormal heart echo so we were sent home to work out the next steps.  

 

It was school holidays, and my three girls and I ran away to the Lake, we'd only been there one night, and were on a 15km river walk when a call came in from Wellington Hospital asking us to be there the following day for a Cardio MRI.  This would determine how bad Skye is and what we were to do next.  We packed up and hooned it back to Wellington the next day for the MRI, after 1.5 hours in the machine they had the data that they needed to make some decisions.

 

Obviously my mind was going mental with the knowledge that we were on borrowed time for VBT and that any delay could change the course of our entire journey.  And so we waited.

 

Last week (w/b 7th August), we heard that the Open Heart Bypass Surgery would be on Monday 14th August, Mr Ferguson (Spinal Surgeon) and the Cardio Surgeons had been having discussions, and basically we are not allowed to have spinal surgery until 6 months after the heart surgery.  

 

Reasons being are that if they did the spinal surgery first there is a risk of a stroke, this is from the drilling releasing fat from the bone into the bloodstream and passing through to the brain.

 

Secondly, they are giving her a sternotomy (vertical incision along the chest, then the sternum itself is cracked open), upon completion of this procedure they will physically wire the chest back up and thus if we start messing with the spine then this could 'open up' her chest wall.

 

So, although I'm bricking myself about her spine, the heart surgery has to go ahead first, and Mr Ferguson stated that VBT would still be an option in 6 months time.  We can no longer brace due to the pressure this would put on her chest wall so we are going to up the pilates and massages once she is fit and well from the heart operation, and do everything we can to keep her spine flexible.

 

To all the families out there reading this, please please get your kids checked for congenital heart issues, just at your local GP with a stethoscope, before embarking on any type of surgery plan, as this has completely deroaded our plans.

 

I so wish that a thief would steal my heart, and then give it to Skye so she doesn't have to go through with this :-(.  

 

Friday 11th August - just had a postponement on our surgery, new surgery date is Monday 21st August.

 

Well, it's Sunday 20th August, we are sitting on the ward at Starship Hospital in Auckland, let's go over to the blog.

 

September 2017

 

We are home safe and sound after Skye's Open Heart Surgery, now we have a few months of intense physio therapy and fitness training to get Skye back up to full fitness and get her ready for her next journey.  We will continue with Schroth, Pilates, Yoga & weekly Raindrop Therapy massages - all to keep her curves as flexible as possible until we know what the next steps are going to be.

 

October 2017

 

Although not confirmed as yet (waiting for the 6 months) we were told by Starship that it is highly unlikely that

Skye will be eligible for VBT in New Zealand (in Feb 2018) as her curves have gone beyond the conservative

limits for New Zealand. 

 

We need a back up plan !

 

So, we obtained clearance to fly from the Cardiac Unit in Wellington and flew to New York to meet with Dr Randall Betz & team in person.  What an experience, the team was just wonderful and they have agreed that VBT is an option for Skye and they can perform the surgery in New York in February 2018.  Holy moly - where on earth are we going to find that kind of money.  That's another day - today we have the best news ever that she is a candidate and that they will do it !! YAY ...

 

November 2017

 

Well, after the great news from New York, we researched worldwide and found a gentleman in Simmermath, Germany - Dr Per Trobisch, I sent all Skye's X-rays etc. to him and he was exceptionally communicative and has agreed to take on Skye's case. 

 

This is just a massive whoop whoop moment, we have a date, WE HAVE A DATE, oh my gosh, he has agreed to 1st March 2018 for the pre-op and then surgery on 6th March.

 

This all depends on getting the cardiac sign-off in early December, but we have a plan - finally :-)  

 

2018 (Aged 15)

 

January

 

Well, we ended last year with my long awaited neuro surgery, and Skye's heart echo, both of which went really well, so we are starting this New Year with renewed energy and hope.  

 

The last piece of the puzzle for planning is we need a heart stress test for Skye at Wakefield Hospital on February 9th, and then we are all set to head off on our new adventures.  Skye is, as always taking it in her stride, and has even been fund-raising for the flights home - through Give a Little: https://givealittle.co.nz/cause/flights4skye and making pumice stone garden art :-).

 

February

 

Finally, some fantastic news - Skye passed her stress echo last Friday - whoop whoop. The cardiac doctor in

Wellington's Wakefield Hospital weirdly enough was from Aachen in Germany - probably less than an hour

away from where we are going :-)   My angels have obviously been working overtime on that one :-).

 

It's Tuesday 20th February - two weeks today Skye will be having her operation with Dr T in Germany - ahhhh !!!

I honestly cannot believe that this is finally it, this might actually happen.  We've been doing heaps of intensive

physio, and booked the right planes to get there.  Who'd have known that some planes are better than others for

keeping your body flexible and more hydrated.  

 

February 26th 2018

 

As I write this, sitting in Singapore Airport on the way to Germany.  The time has come - we're actually doing this. 

Thank you so much for everything everyone has done to help on this massive journey, I'll jump over to the

blog now.

 

Here's a link to the page all about where we are going.

 

March 2018 - Link to Skye's Surgery Journey blog, please click here.

 

WE DID IT :-)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

As always, we’ll keep you posted

 

Skye's mum

x

 

 

Link to Skye's Surgery Journey blog, please click here.