The Medical Bit

Your Medical Specialists will have pointed out what makes your child ‘unique’ already – no doubt non-stop tests and surgery will have also been a part of your lives for a while–if not years.

The following are the main symptoms of WMS – these are becoming diagnosing factors for our youngsters now as more are confirmed with the known WMS genes:

  • Congenital Bilateral Cataracts (born with cataracts in both eyes)
  • Microphthalmia + Microcornea (small eyes with a cornea horizontal diameter of less than 10mm – visible as a small Iris area compared with other children)
  • Small Atonic Pupils (pupils that do not react very much to light or dilating drops)

After cataract surgery parents are naturally most concerned with the level of sight their youngster will have – the medical publications will say things like ‘progressive optic atrophy’ and ‘cortical visual impairment’ but the truth is no one knows …. as we can’t see what they see !

I think ‘light perception’ IS possible and the way our youngsters make sense of this ‘vision’ is a mystery but I do know when we test our daughter by tiptoeing past her (not making a sound) she tracks us ! There is also research that shows when lenses have been removed UV light perception is altered so this is also of interest when teaching our children to make the very most of the sight they have.

MRI Brain Scans also show the following consistent features with WMS children (these signs can be missed on early scans though, as in our case):

  • Postnatal (rarely congenital) Microcephaly (small head)
  • Polymicrogyria of the frontal and parietal lobes (lots of folds on the frontal and parietal areas of the brain)
  • Hypogenesis of the Corpus Callosum (underdevelopment of the corpus callosum area of the brain)

All of these symptoms may influence what your child will be able to do and you will be given a great deal of negative information – the truth is that no one knows yet what the brain is capable of and particularly in WMS youngsters.

We were told by a Neurologist once that everyone’s brain has some sort of ‘difference’ that would show on an MRI, but our brains adapt and compensate.

We are told WMS youngsters have severe learning difficulties and that they will not talk. You will be told many things… but believe in your child and they will show you what they CAN do !

I overlooked some of the little things my daughter was showing me early on and now I watch her and laugh with her and she teaches me the important things in life. I wish I had talked to her more in those early years – told her more about her environment and what was happening to her as her level of understanding still surprises me every day (as does her sense of humour). She also says ‘Dad’ and an emphatic ‘Non’ so I guess they make fools out of the so-called experts.

There are also common facial features quoted such as deep set eyes; a wide nasal bridge and a relatively narrow mouth, but when you are looking at your own beautiful child this is hard to see. Look at our Smilers around the world and you may or may not see any similarities.

I also think there are similar hand and foot features but these are subjective observations of mine seeing our youngsters’ photos. Each WMS family has their own unique child (or children) and they may have things in common with yours – just ask !

What Milestones will my child reach ?

The medical publications are full of what our children won’t be able to do – please speak to our families and see what IS possible – no one knows what each child will be able to do or how they will change as they get older. They may get contractures (joint stiffness) as they age but depending on the physiotherapy programmes, supporting care, orthotics, botox, surgery, dietary advice, tube-feeding, etc. they get they will all differ and all do their own thing !

As a parent you will want to do your very best for your child and making decisions with the information we have between us – making informed choices given the combined experiences we have will make it slightly less daunting. As the condition is so rare remind your Medical Specialists that there are very few other WMS youngsters around the world and ‘yes – they may have similar features to e.g. Cerebral Palsy children – BUT THEY ARE NOT the same’. Please feel free to quote our experiences to them – it is only by sharing our pool of information that we will improve the prognosis for our youngsters.

They won’t be the same as an ‘average’ child – they will be themselves !