Spina Bifida occurs at around week 8 of pregnancy as the neural tube starts to develop. The spinal column starts off as a flat sheet which curls up at both sides to form a closed tube and protecting the nerves. In Spina Bifida sufferers the tube fails to close fully and leaves and open section through which these nerves protrude, unprotected into the womb and begin to suffer irreversable damage.
Where this opening occurs on the spinal column determies the severity. The higher up the back towards the neck the worse the effects on the sufferer. In Megan's case the opening was between her hips which is as low down as you could possibly hope for. This is resulted in Megan having very limited sensation below her knees and is unable to weightbare. However Megan is exceptional in the fact that a lot of Spina Bifida sufferers are unable to use their legs at all and are limp, Megan is capable of pulling herself up on furniture without support and has even mastered the art of stair climbing. She has amazed the professionals who told us she would never control her leg movements and would struggle to sit upright unaided.
Another effect of Spina Bifida is lack of bladder control. This in Megan's condition meant that she has never been able to empty her own bladder. For the first 14 months of Megan's life she was constantly suffering with infections caused by us emptying her bladder and became very ill. Hospital visits became a regular family event and the risk of kidney failure became more and more likely.
In June 2010 Megan had a Vesicostomy performed at Great Ormond Street to relieve this risk and thankfully has been fit and healthy from that day. It was only then that we realised just how behind Megan was in her development, but made short work of catching up with her peers and today you would never know of her fight.
The majority of Spina Bifida sufferers rely on wheelchairs for independance. But Megan is a determined little girl who has never let her difficulties get in the way of anything she wants to do. This is why we are working so hard to get her the equipment that could help her walk, firstly with the help of heavy aids and over time with less and less support.
The NHS has "Limited funds" for equipment and so far have funded a wheelchair, a pair of gators, specialist boots (although only one pair) and a static standing frame that straps Megan into a fixed spot which is frustrating for a little girl that just wants to get on and discover the world. Because she has what is considered the "Essentials" there is no further funding for Megan and therfore it is down to us to ensure she continues to amaze people by proving them all wrong.
As yet we do not know any other families in a similar situation or young sufferes of Spina Bifida. If you do we would love to hear from you. Please contact us at awishformegan@yahoo.com.
