September 1988 to July 1991 (Part II)

[Nethany with her long hair!]
I have been busy lately; especially when the kids are back to school. It has been very difficult to get hold of a free time to sit down and blog. Tonight though, there was a window of opportunity to sit and continue with my blog. Nethany’s story so continue…

The first year in Swansea has been very interesting, full of surprises and excitement. Nethany was admitted to Dyfatty School while Lorraine enrolled to Christ Church kindergarten. I was both busy sending Lorraine to school very early in the morning and later accompanying Nethany to Dyfatty. Nethany has her own driver and transport to school – this would be unthinkable in my home country! At first I would stay a little bit longer in school and watched Nethany go through her lessons and physiotherapy sessions because she would cry if I am not in sight. Later on however, she was quite comfortable with the teachers and this gave me the chance to go home and do the daily house chores. My husband stayed the whole day in the university and only came home late in the evening.















[With Miss Ruth Diehl]
I was a bit lonely when everyone was away at school and when the tasks in the house have been completed. I decided to look for a part-time job as to fill up my time and to get extra cash for the family. Though, my husband’s allowance and child benefits (granted by the British government) were able to cover our daily expenses but extra income would be an added advantage. I was able to get a part time job as a helper in a Pakistani-owned fruit store. Though the pay is not much but I was thankful to have been given an opportunity to work and earn some money. Over the few months, Nethany has shown some improvement, her head control now is getting better, thanks to the p physiotherapy sessions that he had twice a week at home. Through Miss Ruth Diehl, the deputy head mistress of Dyfatty School, Nethany was selected to attend a physiotherapy session at BIRD (Brain Injury and Rehabilitation Centre) in Chester.















[Nethany with her xmas presents]
BIRD has a unique approach to physiotherapy – both my husband and I was trained to conduct the procedures ourselves and performed the sessions with Nethany at home. The training session also included a ‘physiotherapy manual’ as a source of reference. I believed that B.I.R.D’s procedures have greatly benefited Nethany. Nethany had also a few sessions in Honsey Center in London. Luckily enough, I had a cousin who is studying at London University who invited me to stay with her during my visit to Honsey Centre. Honsey’s approach to physiotherapy was modelled to the Hungarian model. As I noticed and through the reading that I made about the history of the centre, there were many success stories to the kids who came here, sadly though, it would not be the case to Nethany because she is severely disabled. Most of the success stories were from those who were with ‘mild’ CP. Nonetheless, our visit to Honsey were both beneficial and enjoyable – This was our first visit to the real London!




















[At BIRD Centre, Chester]
Below is a full report of Nethany’s condition carried out by Mr David J. McGlown the Clinical Director from BIRD, Centre (The Centre for Brain Injury Rehabilitation and Development).

Re: Nethany Pius D.O.B: 30th December 1986 Address: 8 Wyndham Street, Swansea

The above-named patient was seen by me on the 19th, September, 1989 for a full Organic Brain Dysfunction/Neurological Assessment. She has a history of post-natal cerebral haemorrahage and Vitamin K deficiency with subsequent spastic quadriplegic cerebral palsy and skull malfunction. Examination Revealed:

• Respiration was normal with reasonable basal usage.

• Slight Right Exophalmia, probably due to asymmetry of face.
• Wasting of Abductor pollicis brevis muscle bilaterally.
• Severe Kyphosis – with retained foetal curve. Genu recurvatum.
• Brady cephalic skull structure with micro cephalic vault.
• Skull plates overlapping? Premature closing of fontanelles.
• Temperature differential throughout the body, colder on the right.
• No hand function: thumbs indwelling – more on right.
  
• Automatic stepping reflex overcome.
  
• Parachute reactions absent.
• Placing reactions overcome.
• Negative supporting reaction present with marked talipes position of feet.
• The Marie-Foix was preent bilaterally.
• Subluxation of joints: inversion subluxation tendency of ankles onto lateral borders of feet.
• Abnormal gross muscle tone: Hypotonic muscle tone with some ataxia spasm of arms, alternating with hypertonic spasms.
• Oral musculature: increased tone on upper lip; reduced tongue mobility and some recurvation; steeple palate present; delayed swallow reaction; extant bite reflex present.
• Head control: fragile on return; in sitting and in Quadruped position – developing; early beginnings of supporting self on forearms but is unable to sit unaided.
• The peripheral Reflexes were hyporeflexic.
• The Babinski Reflex was retained bilaterally.
• Deep Tendon Reflexes were hyporeflexic.
• The Abdominal Reflex was markedly hyporeflexic.
• The transformed Tonic Neck Reflex was totally absent.
• The Asymmetrical Tonic neck Reflex was retained on all four limbs.
• The Symmetrical Tonic Neck Reflex was retained on hamstrings and elbows.
• The spinal Galant Reflex was retained bilaterally.
• She applies reverse torsion when segmentally rolling.
• The V-VI Intercostal Rolling, Amphobioan and Vojta Spinal Rotation reflexes were all absent bilaterally.
• Impaired purposive movements present.
• Undeveloped laterality as yet.
• Gegenhalten was present.
• Impaired body concepts.

[With Gospel Hall Congregations]
Eye muscle movements included poor papillary reactivity to light, aberrant papillary dilation on the right; increased physiological nystagmus; vertical nystagmus on right; left eye tracking/nil tracking on right; loss of yoking ability present with right convergent strabismus; focus break, no convergence ability; difficulty of independent eye closure present bilaterally; slight right ptosis with facial nerve involvement present. Perceptual examination not possible at this stage. Hand/eye co-ordination: in view of her eye muscle dysfunctions and lack of hand function, she is disadvantaged at both ends of eye-hand co-ordination. No playing activity but likes music. Some neurological hypersensitivity on sides of head and back.

















[With Gospel Hall Congregations]
Repetitive movement patterns include Bruxism. The degree of brain-injury sustained by Nethany has resulted in the presence of primitive and postural reflexes, impaired purposive movements, undeveloped laterality as yet, affected eye muscle movements and impaired perception. On the measuring instrument devise to qualify the percentage of dysfunction present in cases of suspected Organic Brain Dysfunction, this subject’s total score was 94%, indicating that this percentage of the signs we accept as being diagnostic of Organic Brain Dysfunction was present in her case. Conclusions and recommendations: Exposure to Nethany has revealed that she is an engaging and appealing young child, severely disadvantaged by her brain injury.




















[My husband's Graduation Day]
She has already achieved greatly in the face of her injury and the gains, which her parents have obtained, should be seen against her struggle in the face of her disadvantages. Examination has revealed that there are severe signs of Organic Brain Dysfunction in her case. There is a severe neurological basis under-lying her current problems and accordingly, it would seem imperative that her neurological disorganisation should be treated at the earliest possible juncture. I would therefore recommend that the fullest approach be taken to her present problems and should include reflexive patterning procedures aimed at inhibition of her aberrant reflexes and promotion of neurological integration. These reflexive patterning procedures could be incorporated into Home Programme, which Nethany could undertake in the privacy of her own home and which should only occupy some thirty minutes duration daily. Thereafter we should undertake periodic review of her case at regular intervals. I would strongly recommend that in addition to the specialised neurophysiological ‘exercise’ involved in Nethany’s programme, she would benefit from standard paediatric physiotherapy and all other relevant therapies, such as speech theraphy, occupational therapy and any relevant special educational approaches. The difficulty in Nethany’s case is to make recommendations to her parents without seeming to hold out false hopes to them.




















[My husband with Nethany in the snow]
In this context, it is to be emphasised that Nethany’s neurological condition is severe. This centre does not offer miracles. It cannot guarantee when it will achieve a breakthrough, or even if it will achieve one. All that can be offered is the determination to work hard to produce such a breakthrough. With this reservation in mind, I believe that despite Nethany’s present neurological status, it will be worthwhile attempting rehabilitation in order to help her achieve a greater level of functioning. It is our belief that if we can inhibit Nethany’s aberrant reflexes and promotoe neurological integration, Nethany may well progress to exceed all previous expectations. From a practical point of view, her parents should appreciated that we foresee her attending the Centre for a minimum period of one year, during which time the Home-Programme would be altered to suit her increasing needs. After the one-year period, a mutual decision could be taken as to whether rehabilitation is possible or should be continued. Signed David J. McGlown Clinical Director Dated 21st September, 1989