A journey back to 1969 and my early years with facial palsy

Today I received a special delivery letter from Addenbrookes Hospital which was quite exciting because I have been waiting to hear back from them, but I didn’t expect such a fast response!  A couple of weeks ago I requested copies of any records they might still have about my facial palsy, my mum has told me all that she knew and they didn’t really add a lot to this, but it was nice to see it all written down.  Unfortunately a lot of it was very difficult to read because it was scans of micro-fiche, but I got the general picture. I am going to attempt to transcribe!

22 January 1971 – Letter to Mr Gleave at Addenbrookes from J.A. Kuzemko, Consultant Children’s Physician at Peterborough District Hospital)

This is just a note to ask your advice.  I have a child who is now twenty-two months old and who was born with a left-sided facial palsy.  The delivery was normal and one cannot blame any forceps or any other interference.  Over the months there has been a sustained and gradual improvement and she at present is able to close her *eyes and has reasonable action of lower facial muscles but not all the time.  We are not having any problems with the eye and her general progress is very satisfactory.

What I want to ask you is this.  Do you think that in view of the rather slowly resolving palsy which may not resolve completely that anything would be gained by any further investigations or any surgical exploration?

*Unsure why they say I can close both eyes? – Have checked with my mother and she said I could NEVER close both eyes.  She had to be careful which side she held me when feeding so as not to damage my open eye.

23 March 1971 – report from Mr Gleave, Clinic 4

I googled Mr Gleave and found out a little about him from this announcement of his death in the Cambridge local news a few years ago.  I know it sounds daft but I need to know who I was seen by, what their level of experience was.

Born at Gables (this was news to me that I was born at the Gables in Peterborough, I thought this had closed by then but after more research, it appears it did not close until 1970).

Face-presentation; midwife

Mother on gas & air (bless her!)

????? delay in birth

Did not cry immediately

Noted on 3rd day to have a L.M.N. facial palsy (lower motor neurone facial palsy)

Improvement noted at 6/12 and has progressed steadily since then but not complete

No trouble with “L” arm and “L” Leg

????? movement there

????? left ear

III IV VI – Ticked

VIII – Ticked

XI – Ticked

XII – Ticked

“L” arm and leg good

Letter approx. March 1971 from Mr Gleave at Addenbrookes to Dr Kuzemko at Peterborough District Hospital

Thank you for your letter about Karen who I have just seen in our Clinic.

First few lines are unreadable, then…

In the third day after birth was said to have a left lower motor neurone facial palsy which started to improve around the age of 6 months and has improved steadily since.  No trouble has been noted with the left arm or leg at any time and she is said to have skilled movement in these limbs.  It also appears that she can hear in the left ear.

On examination she seems a nice and friendly little girl who has passed the usual milestones at the normal times.  There is an incomplete left lower motor neurone facial palsy but I was quite unable to detect any other cranial nerve or ???  ???? abnormality of significance.

The cause of this facial palsy must obviously remain a mystery but there seemed to me to be two possibilities.  Either there was some assistance given at birth with perhaps a little compression of the facial nerve at the style-mastoid?? fere??? or there may have been some nat?? moulding?? due to the fact that she was a face presentation which resulted in distortion of the skull and stretching of the nerve.  In either event I think there is no active treatment that will be of any help and I have told the parents that further recovery will ???? though she will always be left with a facial paralysis.  I doubt if this will be…

And then it becomes completely illegible again.

24th September 1971 – letter from ?? Holmes, Senior Registrar (PDH?) to my GP (Dr J.A. Kuzemko copied in at Peterborough District Hospital)

I saw your patient Karen again in the Neurosurgical Clinic in Peterborough on the 23rd July 1971.  Her mother says that there has been further improvement in the left facial weakness and that now the left **eye closes completely when the child is asleep and she says it is only particularly obvious when the child is crying or laughing.  In fact in consideration the left sided facial ??? is still obvious but it does not seem to impede the child when she is talking.  There is no evidence of any other abnormality in the limbs and it would appear that the child is probably left handed as is one of her brothers.

I have ??? to see her again in our clinic for further follow up in six months time.

**I don’t think the bit about complete closure of the eye can be correct, I couldn’t have closed that eye if I tried until I had surgery last year.  I am assuming they are just referring to an improvement here.  My mother has confirmed I could never close one eye.

24th March 1972 – letter to my GP from A.D. Hockley – Neurosurgical Registrar (Dr J.A. Kuzemko copied in at Peterborough District Hospital)

This is a very poor copy and mostly illegible but seems to say what they see re my eye and that they do not detect any other abnormality.  It mentions my mother has a slightly asymmetric ????

17th April 1973 – letter to my GP from Mr Gleave at Addenbrookes (Dr J.A. Kuzemko copied in at Peterborough District Hospital)

I saw Karen at our last Peterborough clinic.  There is some flattening of the left cheek still but she has good mouth movement and a very nice smile.  Her left blink is not quite as full as the right.  However, I think there is nothing to do about this and I have no changes ???? to see her ????.

There are further notes which are mainly illegible but again it is mentioned that my mother has facial asymmetry, very strange!

These notes are the original investigations and I haven’t applied to Peterborough District Hospital for my notes yet, but this gives me a better understanding of the original investigations carried out.  I know I had brain scans, this is what all the ticks against the nerve names referred to I expect.

My mother has read these notes and said that the palsy was not noted until 3 days in when they brought me to her to be fed (in those days the babies were removed from the mothers after birth) and she mentioned that I always had one eye open.  A nurse overheard and said “What did you say?” and then the investigations began.  Amazing that my mother was the first person to notice something was wrong.

As part of an exciting new project, some of the Courage to Smile group members have been making videos about their facial paralysis and here is my first attempt at my facial palsy story.

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