Jean, Fred & Ruth's Story

I was born on the 27th March 1962, in my parents’ double bed, upstairs at 49, Reevy Ave, Buttershaw, W. Yorkshire.

I was two days late!!

The midwife who came to deliver me was a nun. Dad told me he could remember her brown dress and her veil.

I’m the seventh of eleven children, so Mum already mastered the art of childbirth.

She managed to keep the twinnies, born in 1959, right up to the end of the 9th month and had no difficulties for their birth, despite Janet’s breech presentation.

Liz weighed in at 10lbs too, so mum wasn't worried about having me at home.

So, in the beginning, all went well and with one or two “pushes”, my head and shoulders were born. The labour suddenly became much more “laborious” as the bottom half of my body refused to abandon the protection of my mothers womb.

Downstairs in the kitchen Dad is busy with half a dozen bairns. Sue is 5, her sixth birthday is in exactly a week (3rd April); Roger is 4 almost 5, Christopher will be 4 in June, the twinnies, Janet and Jonathan exactly 2 ½ and finally, Elizabeth, 18 months old, all as excited as can be because there’s a new baby on the way.

Susan, Christopher, Mum & Roger


Twins?

Upstairs, Mum can’t understand why her pushing is having no significant results. The midwife goes downstairs to tell my father “Things are not proceeding quite as well as we expected. Please don’t let the children come upstairs.” She left my father, in his own words “biting his fingernails to the elbows”, and went back to my mother’s bedside.

From the waist downwards, my little body was stuck, and the midwife had no “handhold” upon which she could make traction. “We knew she was going to be a big one Jean,” said the midwife, “once the X-ray you had done excluded another set of twinnies”. This same midwife had sent Mum to have an X-Ray done during the second trimester because Mum was so huge and the midwife could feel “two heads”.


Dad said that this midwife was a really gentle, professional and serious woman. She rocked my body gently by the shoulders and eased me out of my mother millimetre by millimetre for over four hours, upstairs, in my parent’s double bed.

She spoke gently to mum during these four hours, and soothed her, and stopped her from panicking and pushing at the wrong moments. Together they managed to get me out from my mother. “I didn’t even bleed. You didn’t even tear me Ruth….”

There's something wrong with your baby

“As soon as I felt you were completely out of me the Midwife covered you with a blanket and put you to one side. She didn’t let me see you, she just said "The reason you were having difficulties Jean is that your little girl has something wrong with her." and she went to the neighbour’s to call the family doctor, Dr. A…

“When Dr A… arrived on the scene he took one look under the blanket, said "Your baby has Spina Bifida, you should get her into an institution". I threw him out of the house saying that no child of mine could be put into a home whatever handicap it might be born with.”

The “lesions” I was born with presented themselves as a very large growth on the region of the coccyx and both buttocks, which was pink, skin colour, and which had an extremely developed circulatory system on the outside. The "lump" was about twice the size of my head at birth.

Your baby sister has a Very Poorly Bottom

Your sister's got a very poorly bottom

For the next five weeks, Mum and Dad continued getting to know me and learned to change my bum using two nappies pinned together, and panicked with the safety pins in case they burst this “lump” which occupied so much space in my nappies. They told my brothers and sisters, “The new baby has got a Very Poorly Bottom, so you have to be very gentle with her. They couldn’t hold me on their knees, it would have been too “dangerous” and in any case, Mum told me I would have been much too heavy for them. I weighed 13 lbs at birth.
(teratoma, obviously, included).

Having already brought 6 babies successfully through the neonatal stage, mum started to realise that I was reacting in exactly the same way as all her other babies had. I wiggled my toes, looked at my hands, started to smile, and did “real poo’s” and did not “dribble” urine as she had understood I should do if I had Spina Bifida. After having remarked these ‘incidents’ several times to Dad, they decided, when I was 5 weeks old, to take me back to see the family doctor. He got an appointment for us with a paediatrician but he made it quite clear that it was only to “humour” my mother and that the only thing the paediatrician could do was to tell them how long I could hold out and the difficulties I would have not being able to walk etc etc…!!!

What she has got is perfectly operable

The paediatrician asked mum and dad loads of questions about me and kept saying he didn’t understand the answers my parents were giving. He even said he must not be asking the right questions. He came and looked at me in the cubicle and came back and said to my parents “It’s no wonder my questions and your answers don’t fit. Your daughter hasn’t got spina bifida. And what she has got is perfectly operable.

Mum say’s that at that particular moment she just felt like nothing else in the world mattered. She had a poorly baby and instead of being “condemned to an early death”, my problem could be operated on and I could get better.

Me, Janet, Susan, David (neighbour) and Dinah

The paediatrician explained to my parents the necessity of blood transfusions during the operation and, unfortunately, the polemic which followed put back the date of the operation quite considerably. My parents felt obliged to ask for a second opinion as their religious beliefs totally excluded transfusion and the possibility for them that I die during the operation and be “excluded from paradise” because I had been transfused was totally unthinkable for my parents.

Great Ormond Street Hospital

My parents were quite poor at the time as my father was capstan lathe operator, Mum was too busy with bringing up 7 infants to have a fulltime job, though she did do cleaning jobs and childminding. They had to cash in several insurances and borrow money from friends and family to pay a journey to London to go and see a specialist in Great Ormond St Hospital. I was now two months old and the teratoma (because finally it had, by now, been correctly diagnosed as an SCT), that was mainly cystic, had grown at the same time as me and had become enormous. My parents continued to care for me at every nappy change and Dad told me they used up around 3 maxi tubes of anti nappy rash cream a week, bright pink, that was “à la mode” during the fifties and sixties.

When mum took me to the mother and baby clinic every week they were astounded by the excellent state of the skin covering the tumour. It was totally intact, no infection whatsoever, no mycosis, no excessive dryness…. (Having seen photos of SCT babies born in the 21st century, I am absolutely astounded and in total admiration for the care my parents took of my bottom during the whole period where one “false move” could have had very unfortunate consequences.

Bradford or London?

At Great Ormond St, the specialist judged that the operation was possible, but obviously riskier, without transfusion, but possible. He proposed to schedule the operation at Great Ormond St, and wrote to our paediatrician to inform him of his opinion on my case. My parents took me back home to think about it.

If I was operated on in London, (we lived in the north of England) my parents would have to find accommodation for the period of my hospitalisation, they would have to have a 24h a day child minder for the 6 infants left at home waiting for us to come back, there would be a long and, for me, uncomfortable journey from Bradford to London and all of that was going to cost money. They had already borrowed quite a large amount that was going to be difficult enough to reimburse just to go for a consultation and even if medical care in England was free at the time, the “hidden” costs rose to such an amount that my parents started to look wider to find financing for my operation.

Before they had to resort to taking out loans they would never have been able to pay back, our family paediatrician contacted them by letter, asking them to allow him to have the honour of performing the operation on me. He accepted implicitly in this missive that he was willing to attempt the operation without transfusion, and later in his surgery he started planning the schedule.

I was now three months old and the skin on my tumour was still as soft as a baby’s bottom! I think it must be at about that age that this photo of Nanna and me was taken.

My nappy is outrageously bulgy. I looks like I have a bustle.

The operation is scheduled, for the middle of the summer, and as I’m going to undergo surgery my weaning is postponed and I stay on an all milk diet until after the operation. But this teratoma on my buttocks is draining quite a lot of my energy and when I’m admitted to hospital for the pre-op period, I am so anaemic that they have to postpone the operation.

A week later they decide that the operation has to be performed immediately. The skin on the tumour had degraded so rapidly and totally during the week without my parent’s total care (and the 3 tubes of Napolene), that they feared a rupture of the teratoma with all it’s terrible consequences.

The operation on my SCT took about three hours (Mum can’t remember exactly) and entailed the removal of most of my left buttock, a muscle in my left leg, several nerves and the reinsertion of my rectum. She says that when I got back from the operating theatre I was really pale and tiny and it made her cry to see me there “all pale and tiny and stitched up”. Daddy has often told me about my eyelashes. He says they looked like two black spiders on my cheeks. I was pale and beautiful and fragile and mended.

A cuddle at last

After the operation I was doing so well and fighting to exist that I was put directly on the paediatric ward, I didn’t even spend 5 minutes in Intensive care. I stayed another week in Bradford Royal Children’s Hospital before going home to be cuddled by all my brothers and sisters for the first time in our new council house in Clayton, where I lived until I was 6 and I learned to live like everyone else, or almost.

Because I’m like everyone else, but I had something special at birth. A something special that is sometimes, even often, difficult to come to terms with. But also a special something which makes you an eternal survivor and an eternal fighter.