ELEANOR ROSE VICCARS

Today my daughter Eleanor would have been 32.
Sadly she died after only 10 days.

I want to write about her birth and death, as its a part of my life. It's always been my intention to leave a record of my thoughts and feelings as a person with MND, but also, to leave information about me for my family to have as a record of events in my life. 
So forgive me, this account has very little to do with MND, except that it did happen to me.


My baby was due on Christmas eve. I had felt there was something wrong all through the pregnancy, this baby was to have been baby number two. I had felt Eliza, my first baby, moving nice and early in the pregnancy... well it was, according to THE pregnancy book at that time, (1977) ,Gordon Bourne.

I was so anxious, re pregnancy two, that I had asked my consultant Mr Williams at Cambridge, for an amnio... it was early days for this test, and the consultant dismissed my anxieties, "You have had one perfectly normal child. An Amnio is simply not necessary!" ........... Remember, Scans weren't done as the norm at this time.

Christmas morning,  my waters broke. I struggled to roast the turkey and be jolly for Eliza. But I did feel rough on and off all day.

I noticed meconium on Boxing day afternoon, and we went to Mill Road Cambridge. My friend Marjorie, whose birthday it was, was took over Eliza. I knew Liza would be well taken care of. I had much to thank Marjorie for during the next two weeks especially....... and for a long time afterwards.

A drip was set up, but no action ! Ray went back to our house. He returned early in the morning . I went into the delivery room about 11:00. I found it hot. A window was opened and there, ouside the window, was one lone pink rose.

Eleanor was born about lunchtime. The room which had just a midwife prior to the delivery, filled. She must have pressed a button. Drs and  other nurses all rushed in. Someone asked the Dr a question. Her respose was " I dont know. I cant  deal with it when I've got a baby like this".

All this time no-one spoke to me . I kept saying what is it, boy or girl... boy or girl... over and over again. Eventually I was told my baby was a little girl.

For a few micro seconds, I was thrilled.
But, almost immediately ,a fear  swept over me. Things weren't anyways near normal......

Sister Zizler came to me ,holding my swaddled daughter. She said,  I'm sorry your baby wont live very long.

My response: just 10 or 12 years ?... NO... 10 or 12 months ?... NO... 10 or 12 weeks...NO...  

Ten or twelve days they said.
She had spinal bifida and hydrocephaly.

I went to a private room... WARD 4... That night Ray came back with a picnic sent from Marjorie... tit bits of tasty food and a gin and tonic in a tonic bottle.

Mr Williams came in.. I'm sorry he said... I wasn't to know.
I explained that I wasn't a litigious sort of person... but suggested he should listen to people in future.. as I had always known there was something wrong
..... and then told him to leave.

The next day, I went to see Eleanor.She was in a side ward of the SCBU. Some nurses greeted us. Some avoided eye contact. Apparently, as she was going to be allowed to die, it was a conscience decision on their part.
Ray and I met with doctors.... Eleanor had been scanned. Her brain was extremely damaged. She would not be able to see, hear, talk walk and would be in considerable pain and needing frequent operations if she was to live, in short, no quality of life......
Whilst it was a decision to allow her to die, the medical staff did consult with us... but I felt this was a token and anyway having the full information, we were in accord with them.

So Eleanor was christened. We stayed with her,..... each day from lunch time to late evening....... Remember, we had Liza to care for too and we didn't want her to feel neglected,  uncared for, unloved or damaged in any way.
....... Each night we drank bacardi, bought from the off license opposite the maternity unit on Mill Rd.

I stayed at the hospital one night , all night. Eleanor was failing. I was told to hold her still if she should stop breathing.
That night was the night the Yorkshire Ripper was caught. Radios were on day and night in SCBU... and there were news flashes all night.

Eleanor didn't die that night. She died on Jan 6th.

On Jan 6th, I was at home in the shower, when I had a tremendous contraction pain... only one... very fierce. Five minutes later, the phone rang. Ray came to tell me Eleanor Rose had died.

Some yrs later the Mill RD Maternity Unit was replaced by a new maternity unit , "The Rosie", geographically near Addenbrookes.

Ray and I got  permission to dig up the pink rose. It was planted in our garden in St Neots.

Strange how roses have followed me. My middle name is Rose, Eleanor was planned to be Eleanor Rose, we used Rose again for Christina Rose and should Christina have a daughter she thinks they will give it the name Rose as a middle name.

Roses are pink for me... and always will be, as a reminder of my dear  baby.

Eleanor was cremated in Cambridge. In the Book of Remembrance we put... Loved Always... and she will be.


HUG ME, I'VE GOT MND