Childhood ailments were a mystery to the medical profession 150 years ago - and none more so than the case of Rebecca Novis. One of Great Ormond Street's first patients, she seemed paralysed and immune to pain, failing to respond to the prick of a needle. While her parents fussed over their nine-year-old daughter after she was admitted on December 26, the doctors puzzled over her symptoms for days. But then, when she thought nobody was looking, she was caught opening her eyes and stretching - revealing her condition to be an extended fit of the sulks over Christmas presents.
Rebecca's is probably the least serious of the 50,000 cases dealt with between the opening in 1852 of Britain's first children's hospital - now arguably the most famous in the world - and the start of the 20th century. But she will take her place in what will be one of the most comprehensive surveys of Victorian medicine.
By the time the Queen visits Great Ormond Street on St Valentine's Day to celebrate its 150th anniversary, the first 10,000 cases will have been fed into a database. Completing the list will take almost two years, but medical historian Andrea Tanner, who is overseeing the project, says the end result will provide new insight into development of children's healthcare.
If Florence Nightingale had prevailed, the hospital might never have opened. She was an opponent of Charles West's initiative, which at first catered for only 10 children in the converted library of the mansion at 49 Great Ormond Street, once home to Queen Anne's personal physician. West had seen what could be achieved at Dublin's children's hospital and was appalled that in London, a city where half the recorded deaths were of people under 15, there was nowhere to treat acutely ill youngsters.
Tanner says: "There was a lot of opposition to having an institution just for children because it was believed that a child's best place was with its mother. Hospitals were not thought to be the right place for children because they couldn't articulate what was wrong with them. Florence Nightingale was adamant about this - that it was a very bad idea even to have children on wards.
"When the hospital was founded, West said that we didn't know much about child diseases. We needed to find out about them and improve the level of nursing care. We needed to find out about saving children's lives. He insisted that it was intended for children with acute problems, not long-term illnesses. It was for the sick, not the sickly.
"But up to 1865, we have found they were treating TB, a lot of croup, rheumatism and heart diseases. They were things that the hospital couldn't do much about, the diseases of poverty and infirmity. It was the doctors who decided who got in, and often it was because they suffered diseases that the doctors thought were interesting."
Such interest did not always follow the medics' speciality. W H Dickinson was an expert on Bright's disease, which affects adults' kidneys. At Great Ormond Street, however, he was clearly interested in children with neurological disorders - brain tumours or disrupted speech patterns or autism, even though he would not have known it as such.
"I wouldn't say it was experimentation," says Tanner. "It was observation. They had them on the wards so that they could watch their actions and moods to see if it mirrored the progress of disease. They didn't know what was wrong, quite often, until the child died and there was a post mortem which revealed a tumour or a heart defect."
That was the case with Thomas Garvey. His notes and photo portray a lovable little boy, but when he arrived he was paralysed in his right arm and leg. Nurses lavished attention on him, faithfully recording his heartbreaking decline until he could no longer read or speak. He died after six months - and it was only then that a brain tumour was revealed.
But while diagnosis was limited, treatment was forward-thinking. There was a large garden, and play was considered essential. One girl of a nervous disposition was prescribed a skipping rope to give her confidence. West was keen that medicine should have a pleasant taste and that doctors should have warm hands, talk to the patients and play with them.
It was a major departure. Nurses were chosen because they were kind. If the children disliked them, they were dismissed. There was no corporal punishment; if anybody raised a hand to a child they were out.
Nightingale might not have approved, but Dickens did. So did J M Barrie; the hospital still benefits from the royalties of Peter Pan.
Dickens, who used to live nearby in Doughty Street, embarked on a series of lectures in support of the hospital project, telling one audience: "This is the pathetic case which I have put to you; not only on behalf of the thousands of children who annually die in this great city, but also on behalf of the thousands of children who live half-developed, racked with preventable pain, shorn of their natural capacity for health and enjoyment. If these innocent creatures cannot move you for themselves, how can I possibly hope to move you in their name?"
The hospital grew to 200 beds by the end of the 19th century, with 60 more for convalescence at Cornwall House in Highgate, north London, which those days was in the countryside.
Volunteers are compiling the database from microfilm copies of the original records, many of which are in poor condition. The Wellcome Trust has funded the filming and Tanner is on a Kingston-upon-Thames University fellowship, which she hopes will be renewed to see her through to completion.
The database is likely to attract family as well as medical and social historians. Tanner says: "It is an amazing source. Each entry has name, age, address, admission and discharge, illness, result and remarks. There will be a profile and progress report. It will give us a complete picture of childhood illness morbidity.
"At the beginning, the case notes are very chatty and unscientific, but they have the most extraordinary details - minute observation which could run to 30 or 40 pages. There were photos and drawings. Sometimes there are drawings by the children who needed to explain what was wrong with them. It is a microcosm of the child's life. Later, the notes became more scientific and concentrated more on measurements, such as temperature and dosage of medicine."
Among the early records are those of Mary Anne Smith, aged seven, the daughter of a servant employed by the hospital's patron, Queen Victoria. She suffered St Vitus's dance, which the doctors thought had been brought on by the shock of being made to touch the corpse of a relative.
Although there was no cure, to oblige the queen the doctors tried binding Mary Anne's limbs to contain the twitching, weighting her limbs, hot and cold baths, egg-based diets and large doses of laudanum [tincture of opium] and alcohol.
Today, the condition is known as Sydenham's chorea, affecting girls particularly and often a consequence of rheumatic fever. Facial grimacing and jerking movements persist for six to 10 weeks and sometimes recur.
There is still no specific treatment and sedatives and tranquillisers continue to be used to suppress the involuntary movements - very much as was the case 150 years ago.
Wish fulfilment
Today, Great Ormond Street enjoys the status of a national treasure. It has the widest range of children's medical specialties in Britain and the largest paediatric intensive care and surgical unit in Europe.
It is one of only four clinical research institutions to receive top rating for its work; and, in association with South Bank University, it trains 25% of Britain's paediatric nurses.
The 335-bed hospital treats 22,000 in-patients and 77,000 out-patients each year. Around 13,000 operations are carried out annually. Specialists also take their skills out into the community, running 116 clinics a year in 70 different locations. More than half the patients see at least two specialists, and 9% see more than five.
Great Ormond Street's reputation also brings sick children for treatment from overseas - most often funded by their governments. About 8% of the hospital trust's income is raised from international and private patients - 90% of which comes from treating overseas children, although they represent only three in 100 in-patients.
The trust employs more than 2,400 staff, including 315 doctors and 900 registered nurses and healthcare assistants. More than 250 volunteers offer free support to the hospital.
Other services based at Great Ormond Street include the Child Death Helpline, which offers support and advice to bereaved families from within and outside the hospital. Referrals are accepted from any professional or agency, or families may self-refer.
Fundraising for the hospital has proved controversial. In 1989, it was swamped with donations after appealing for £42m to pay for redevelopment work. When the fund reached its target after only 15 months - more than a year ahead of schedule, and with money still pouring in - organisers of the Wishing Well appeal pleaded for further fundraising events to share the proceeds with other hospitals or charities.
The hospital launched the appeal after the Conservative government at the time said that it would contribute only £30m of the £72m cost of building a new suite of six operating theatres, an intensive care unit, a ward for children with leukaemia and cancer, a ward for children with Aids and other diseases, and new surgical and other wards with facilities to accommodate parents.
Raekha Prasad
