Sophie’s Story from a parents view…

I recall the moment being lied in the scan room for our first scan with Daniel my partner. Before the sonographer could tell us, Daniel turned to me and said ‘There’s more than one in there!’ Looking puzzled we turned back to the sonographer who then confirmed we were expecting twins! Just minutes before this, we were sat in the waiting room waiting to see our unborn BABY for the first time; while stretching I knocked a poster off the wall, this poster read ‘Are you expecting Twins or Triplets?’ putting it back on the wall, we laughed it off...who was to know this would have been a sign! Coming out of the hospital after our scan, we were excited to tell our family and friends the news that we were expecting identical twins, but at the same time nervous and anxious for the journey we were about to embark on...we weren’t to know then that that was the easy part and we were to face an even bigger journey!

  

 

 

 

Our identical twin girls Sophie Joy and Heidi Bliss were born on the 6^th December 2009 at 32 weeks gestation after I went into premature labour with them. They were born by emergency caesarean section and weighed 4lb 2oz and 4lb 3oz and the first month of their lives were spent on the Neonatal Unit at our local hospital. They were born healthy, just small and had to stay in NNU till their bodies were mature enough to establish feeding and stop tube feeds and just till they had put on a bit more weight in general. 

 

 

 

 

  Although again this was another journey to face and not an easy one at that, we came through it and bought our little girls home and things were perfect! 

The first few months after NNU were great and both girls were doing brilliantly for being born so prem and although Sophie’s earlier brain scans from NNU showed some degree of abnormalities which on researching can sometimes be associated with CP, our concerns to what this would mean for Sophie were always reassured by Sophie's Consultant who was optimistic about her and her twins future.                               

 

     The first year with the twins bought us lots of fun, but it also bought with it lots of sleepless nights, the joys of weaning twins and all of those ‘developmental firsts’...and it was through those ‘developmental firsts’ that came the start of the bigger journey we were to face!

Watching our little girls grow and develop, we could see that they were developing at a different rate to each other. While one twin was sitting comfortably at 8 months, the other did not want to/couldn’t sit unaided.                                          

 

 

 

 

 

 

While one started to learn how to get around the room, the other just sat happily enough supported by cushions. While one started to get up and walk, the other was still happy enough to just sit and play; in fact it wasn’t to be until Sophie was 10 months old she could finally sit unaided, 11 months old that she finally started to commando crawl and 18 months old before she was able to crawl on her hands and knees. Being reassured by Sophie’s Consultant until now that this was just ‘developmental delay’ due to the premature birth, we weren’t convinced and finally pushed for the diagnoses we feared it would be ‘Cerebral Palsy’ (Spastic Diplegia CP).

From getting this diagnosis when the girls were 15 months old till now has been a whirlwind. Sophie has had just over a year of physiotherapy to help not only with the tight muscles (spasticity) in her legs, but to install the correct messages to the part of her brain which doesn't work properly...the part that isn't telling her legs to do what they should be doing and climb, walk and run like other children her age do all of the time, like her twin does all of the time!

Although finding out Sophie having Cerebral Palsy wasn’t so much of a shock to us as we were able to see the signs before her diagnosis (with help from Nana, who has ironically been a teacher for children with physical difficulties for years), so we were expecting it. The difficulties faced with having a child with additional needs were always going to be a challenge, not only for us as parents, but for Sophie and her siblings, especially that of her identical twin sister.       

 

 

 

 

Although Sophie and Heidi are just like any other twin girls their age; they enjoy each other’s company, engage in games together, talk to each other and even bicker and fight at times too, there’s one thing missing from their relationship and that is to be running around with each other and playing in the park together! 

 

 

 

 

  To look at the girl’s sat together playing, you wouldn’t be able to point out which twin has the disability and it’s not till Heidi gets up and runs around and Sophie follows behind on her hands and knees that the differences are noticed. It shouldn’t have to be like this, when you think about having twins you think of them reaching all of those developmental firsts together and the fun and games that that should bring with it! You think about running down the road chasing after two toddlers, not one while you’re carrying the other! Although Sophie has coped remarkably and in a sense she doesn’t know any difference, she is such a determined little girl who always has a smile to show for it, she has pushed herself to reach milestones that have come as a struggle, but having her twin by her side has in a way spurred her on. In another sense however, having a twin sister who was reaching milestones way before she was able to and in some cases still unable to, has come as a frustration to Sophie and this has become more apparent recently now that her brother who has just turned 1 is now also walking confidently; how disheartening for a nearly 3 year old to see and how upsetting for us as parents to see.

Although since having our twins life hasn’t been the easiest, we have always tried to have a positive outlook on life and as a family believe that life is what you make it!  Although some things come as a huge frustration to Sophie, we have never held her back back from doing anything and even if we tried, our determined little girl wouldn’t let us…she gets stuck into anything her sisters and brother do and even though things come as more of a struggle to her, she does things to the best of her ability and has fun with it! She makes us so extremely proud each and every day and although all of our children do, of course!, for Sophie, it’s in some ways the tiniest achievements that make such a huge difference and that make us proud. She has come on remarkably, from only being able to commando crawl when she first started her physio at around 1 1/2 years old to now at 2 3/4 years being able to walk using her Kaye Walker (albeit with the difficulties with come with spasticity of the legs of course) and she now loves the little bit of independence that walking with her frame brings.

Coping with CP is never going to be easy for Sophie, we know that! We know for Sophie having CP, physiotherapy will be on going for the rest of her life to manage her condition and we know over time and as she gets older things will only become more of a frustration on her. We also know that as parents we are going to do all we can to make this is easy on Sophie as it can be and is the reason why we have come to the conclusion we have done in embarking on another huge journey, the biggest yet, for Sophie and all of us as a family! A journey to hopefully having SDR, an operation that could make such a huge difference to our little stars future!