My Story

My story begins on 15th January 1998 when my mum and dad found out for the first time that they were having another baby.  The Dr said “no wait I have two heartbeats you are going to have twins!”  After they picked Dad up off the floor there was excitement and disbelief.  The Dr sent my mum for the usual ultra sound to make sure everything was ok, my mum was 15 weeks pregnant at this time.  After the ultra sound and tests were done our lives changed forever.

The tests showed a condition known as TWIN to TWIN transfusion, which basically means one baby is getting all the nourishment from the placenta and the other baby very little.  I was the baby that was getting very little nourishment, I was very small and not growing.  The Dr’s advised that they didn’t know how to cure this condition or why it happens in some twin pregnancies and not others.  But they did know that by draining the fluid via a procedure called an amniocentesis (which is basically a big needle used to drain fluid from the mothers uterus which you could imagine is less than pleasant) this would relieve the strain on the bigger twin and give both babies a better chance of survival.  Mum would go into hospital have the fluid drained, stay overnight and then go home the next day.  Mum had to have the fluid drained (amniocentesis) 3 times.  It was the 3rd March 1998, the 3rd time the procedure had been done and the Dr thought that things were turning around and everything was going to be ok.  There was HOPE….We went home as we usually did, a couple of days after, mum started to feel really sick.  She went to the Dr’s and they sent her straight to the hospital.   We don’t know what went wrong.   My twin sister had been working really hard trying to pump the excess blood through her little body, this put a lot of stress on her heart.  Then on 7th March 1998 my twin sister could not take all the stress that was put on her tiny heart any longer and she passed away.  Mum was 24 weeks pregnant at this time.  The Dr’s said to mum and dad that I would probably not make it either as I was so tiny. For the next four weeks my mum would go for ultrasounds every week and by some form of a miracle and lots of prayers I just kept on growing from week to week.

Then just after Easter in April 1998 things started to change, I was getting distressed and the Dr advised that he thought that I should be born.  I was 28 weeks gestation but even though I had caught up a little in the last four weeks I was only the size of a 24 week old baby.  My lungs were not developed properly and it was a huge gamble as too whether I would be strong enough to fight once I was born, but the Dr’s didn’t have a choice if they didn’t deliver me straight away I would not have survived at all.  I came into the world on 14th April 1998 with a little scream, which I think surprised everyone, weighing just 680grms, not much more than a tub of butter.  I was checked over by the Pediatrician Dr David Cartright and then hooked up to humidicrib which was my world for the next four months.

Look close and you’ll see Dad’s wedding ring on my arm

 

While I was in intensive care I was fed through a tiny tube and a syringe and on a couple of occasions at night my body decided it was too hard to keep breathing and stopped for a little while but with the nurses help I got going again.  I also had laser surgery on my eyes twice to reduce the amount of red blood cells in the back of my eyes which is common for babies born as early as I was.  If I didn’t have this done I would have been blind.  When I was big enough Dr Cartwright started to drop the levels of oxygen I was breathing since I was born and to breathe by myself but that was easier said than done.  It wasn’t until just before I left the hospital that I was strong enough to not need the oxygen.  During my stay in intensive care I had some scans that showed I had some bleeding on my brain at some stage and the Dr’s thought that I might have a slight impairment on one side when I got older.

The next 12 months were pretty tough, mum and dad will tell you I cried and screamed pretty much the whole year.  Even with an allowance for being premature I wasn’t meeting the usual milestones, I wasn’t sitting up or crawling and mum and dad knew something just wasn’t right.  When I was 14 months old I was finally diagnosed with Cerebral Palsy and the story now was somewhat different to when I left hospital.  We were told that I probably wouldn’t do anything much at all…..ever; I wasn’t expected to walk, talk or be able to do anything so as you can imagine mum and dad were pretty shattered.  And so our journey began.

We got in contact with the Cerebral Palsy League and I started having Physio, Speech and Occupational Therapies (click here for a video of one of our sessions) through the League and privately as well.  The plan was to do as much as we could while I was little and still developing to help me when I got older – known as Early Intervention.  As I grew I started to need more and more specialised equipment and diets to help me gain strength and grow the way I should.  I went to a local child care centre a couple of days a week when I was big enough and met some lovely friends and we also got a bit of an insight into what school was going to be like.  I started primary school with all the other kids my age but I was the first one there with a disability like mine so we had to start learning what worked and what didn’t with the school. I got my first laptop and electric wheelchair in Grade 1 when I was 6 years old.  After a couple of years I eventually moved to a bigger school with a Special Education Unit (SEU) as they had more of the skills and resources I now needed.

I really started to advance in this school, my reading was getting better and I found I could do maths pretty well too.  The SEU had some really wonderful special needs teachers as well as class teachers, I enjoyed going to school.  Being integrated into a mainstream class was a little difficult at times but having the SEU teachers there really helped.  Towards the end of primary school I started spending a day a the high school I would be going to so I got to know where things were and met teachers etc.  I found this really helpful too as I don’t like big changes and I’m again doing some of my classes in the SEU and some with all the other kids.

Obviously I’ve grown up a lot more now and while I’m not big I am heavy enough to need some more equipment like a stairlift for home, bigger wheelchairs, walking frame that I want to learn to use better and a special bed.  All this time I’ve kept having physio but we got to a stage where my hips were becoming an issue so I had a bilateral osteotomy and lengthening of muscles in my legs and hips in late 2011. This has helped me to get my legs and feet moving in a straight line without risking my hips dislocating.  I did a lot of hard work in the year following this operation to get my strength back, the plates in my legs came out in Jan 2013.  When the plates came out I also had Botox injections in my hamstrings and knees as well as lengthening the other hamstring they didn’t do last time.  At this time I was looking forward to getting on my feet but unfortunately I had a few set backs.

Once my bones got strong again and I was allowed to stand I struggled to get my boots to fit my feet properly so I could stand without them hurting and some of the muscles in my legs went into spasm for a while which took some work to relax.  Before the osteotomy surgery I had a small amount of scoliosis which was being monitored by the physio, but late in 2012 we noticed it getting worse and had an x-ray.  When the CP Health team saw the x-rays in early 2013 we were all shocked at how badly curved my back had become.  So, because of what the x-ray showed and the stress the scoliosis could have been putting on my organs next was a visit to the respiratory specialists to check on my lungs and breathing, a cardiac specialist to check on my heart and finally the spinal clinic.

That is all still to come in a month or so but in the meantime it seems I’ve developed a large blood clot in my thigh from a hernia I didn’t feel until I had a scan in the emergency room at the hospital.  Right now I’m on tablets to try and fix this so the hernia can be operated on to prevent more clots.

Well that’s where I’m at for the moment.  Thanks for taking the time to read all this, and once I get through this next period I’ll get an update posted.

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