_______
‘Doctor, can you come and see Michelle?’ asked the ward manager when I answered my bleep during an outpatient clinic at the institution for people with learning disabilities. It was known as ‘mental handicap’ in those days.
‘Is it urgent?’ I asked, thinking of the list of people I still had to see that morning. ‘What’s the problem?’
‘She’s very irritable. She’s been pulling her hair out and not letting us get near.’
‘I’ll be there as soon as I can.’
I finished my outpatient clinic, collected blood samples from relatives to test for Fragile X syndrome, checked through test results that had come from the labs so they could be actioned or filed away as necessary, and then made my way to the ward.
The institution was a monument to the nineteenth century care of the ‘mentally defective’. Its Grade II listed building was sparsely furnished, creaking and looked in need of urgent renovations. It had been a ‘cradle to grave’ hospital in its heyday, catering for the physical, mental, spiritual and educational needs of all its patients. Many had been institutionalised for being what was termed ‘morally defective’; teenagers who had borne children out of wedlock, or girls who had been a little too difficult to control. Others had been incarcerated almost from birth, professionals believing and coercing parents into thinking that it was the ‘right thing to do under the circumstances’ for those who were deemed ‘ineducable’. For many patients, this hospital would be the only home they would ever know. But unlike other large institutions of its kind, it was not set in acres of fields out of sight and out of mind. This hospital was located in the centre of the local community, with the dangerous, fearful and intolerant ‘normal’ world just beyond its wrought iron gates.
Ringing the doorbell to one of the ground floor ‘houses’, I waited for the house-manager to let me in. A rotund female nurse from Mauritius opened the door and invited me to their little office upstairs.
‘Come, Michelle,’ she called in a rather loud and heavily-accented voice. ‘Doctor’s here to see you.’
I picked up the thick set of notes from the desk. It was crammed with reports and programme sheets from her ‘further education centre’ activities, bowel and weight charts. Yet there was very little in her notes to tell me about her personal history; about why she had been admitted in the first place, about her physical, emotional and psychological needs, about her abilities and level of functioning.
A woman of about 22 years old was standing uncomfortably beside the open door. She rocked from side to side, groaning and drooling, looking from the house-manager to me, unable to verbalise her distress. I introduced myself and held out my hand towards her.
‘What’s wrong, Michelle?’ I said quietly, noticing patches of baldness on her head and the thinning blond hair. Gingivitis was clearly evident as she opened her mouth again and groaned. She grabbed my arm and placed my hand on her protruding abdomen, rubbing it up and down over her thin summer cotton dress.
‘Is your tummy hurting?’ I asked again. ‘Come, let me have a look.’
The dormitory was empty. All the other residents were engaged in their various day activities in the hospital grounds. Michelle threw herself onto the first bed we came to, the hem of her dress riding up her thighs. She parted her legs.
‘She won’t let us put a pad on,’ explained the house-manager. ‘She’s doubly incontinent, but she won’t even let us bathe her without a struggle. She only gets in the bath when she goes home.’
‘How often is that?’ I asked, noticing the redness of her crotch.
‘Oh, Michelle goes home every weekend. Her mother looks after her, but she doesn’t stay the night. Grandfather is there to help out.’
I saw the distended abdomen lying compliantly on the bed in front of me. I remembered the rule of thumb we had been taught in medical school about the causes of a distended abdomen, and ran through the ‘Fs’ in my mind; fat, flatulence, faeces, foetus… My hand palpated gently. A shocking realisation dawned as I calculated she must be almost twenty-eight weeks pregnant. No one had mentioned pregnancy. It was clear this had been missed. I felt the baby kicking, and as I did so Michelle grabbed a bunch of her hair and looked confused and worried.
The weeks and months that followed were challenging for us all. Michelle was too advanced for anyone to seriously consider a termination of pregnancy as an option, even if we were able to find an obstetrician willing to undertake such a late procedure. We had to try to communicate with her in some way, to help her understand what she and her body were going through, and what would happen when the baby was born. Would she be able to tolerate a normal vaginal delivery, or should we plan for an elective surgical intervention? It was clear Michelle was too disabled to care for herself, let alone her baby, and there were issues of immediate fostering and adoption, and how we would have to prepare Michelle to say goodbye. Then there were the nightmarish issues of consent. Could Michelle consent to anything that complicated? Did Michelle have capacity to consent to sexual relationships? Who was the father of this baby? Had Michelle been the victim of a rape, or was this the product of long-term sexual abuse?
I discussed her care and management with my consultant and our team of specialist nurses, social workers and clinical psychologists. Who would be engaging in intimate relationships with a severely mentally-handicapped woman who was doubly incontinent? She was always escorted on the hospital grounds, and lived in a female only dormitory. She had no particular friends, and did not socialise with the male residents. It was not unusual for the more able female patients to have sexual encounters with male patients on the hospital grounds, sometimes in exchange for a cigarette.
Soon after the diagnosis, her pregnancy was dated by ultrasound scanning, and the police were called to investigate. Interviews with her mother led us to confirm that she was mildly learning disabled herself, and all personal care was carried out by the grandfather who lived in the same house. We had to act, even without proof, and stopped all her weekend visits home. At first we allowed family contact at the hospital with a member of staff, but they became more and more uncomfortable when the police investigations continued. Eventually, Michelle lost all contact with her family, at a time when she probably needed the safety of familiarity in her life.
When my six-month training placement ended I moved to another training post in the psychiatric training rotation, just after Michelle gave birth to a normal, healthy baby girl by elective caesarean section. The infant was taken into the care of social services immediately, and her grandfather was eventually charged. I never had a chance to say goodbye to Michelle when I left, but I was reassured in the knowledge that she was having regular one-to-one sessions with a clinical psychologist who was experienced and caring, and interested in her emotional wellbeing.