The 1960s and 1970s witnessed an explosion of knowledge about congenital heart diseases, particularly because of the exploits and innovations of surgeons. Cardiac surgery developed as a speciality from Thoracic Surgery. Recognition that congenital cardiovascular abnormalities took their major toll in infancy stimulated the development of Paediatric Cardiology as a separate speciality from the rapidly developing specialty of Adult Cardiology, which was already fighting to separate from General Medicine. Successful management of congenital heart diseases depended upon the courage, innovations, and technical genius of the cardiac surgeon, which in time led to the development of Paediatric Cardiac Surgery as a separate speciality. However, such dexterous skills alone were not enough to produce successful outcomes. Proficiency in understanding the pathological anatomy of the lesions, accurate pre-operative diagnosis, investigations, care of children with heart disease, anaesthesia, intensive care, and particularly specialist nursing were vital; and thus, these specialities developed as the surgical triumphs increased and treated more complex congenital anomalies.

In the 1970s and 1980s, increased understanding and discussion of new discoveries and techniques, and the ensuing problems, often unexpected, commanded enthusiastic audiences. Conferences were many and everywhere. The relative few involved, mostly glamorous surgeons who knew something, were a group sharing experiences around the developed world, where once rheumatic valve diseases were the dominant cause of heart diseases in the young. The less affluent world was equally interested in congenital heart defects but without expertise or funds, and had many more pressing health problems than congenital heart disease. Important world congresses of cardiology and international meetings gave little time and space to discuss the ails of children with heart disease. For the cardiology congress organisers, there were more important and financially rewarding matters to debate relating to adult hypertension, valvar, and coronary diseases. Congenital heart disease was viewed as an unimportant “pimple” to which to allot time, with too small an audience for organisers of global meetings to help. Such matters attracted little or no finance from industry to help conference expenses. Fortunately, the developing technology for imaging and invasive investigations had an interest and showed a willingness to take part.

As Scientific Secretary of the Association of European Cardiologists (AEPC) in early 1970s, the first established society addressing issues of paediatric cardiology, I was frustrated because the organisation excluded membership of cardiac surgeons who, to me, made the most advances, and had the most interesting things to say. A bigger challenge was the constant fight, often unsuccessful for a little time in international congresses for congenital heart disease and paediatric cardiology. “How do you know some of the diseases in adults that you treat, I asked, do not begin in childhood? How can you exclude us, I challenged?” Mostly this fell on deaf ears or would receive a few crumbs of time and space. Paul Hugenholtz from Holland, organising the European Society of Cardiology's growing influential conference, was a sympathiser with the needs of paediatric cardiology.

Contemplating the next necessary forays and devices to get increased exposure for our new discoveries in 1975, a “eureka” moment occurred in the bath – the only place for prolonged and peaceful contemplation (away from the calls of domesticity and work). “Why not have our own congress – A World Congress of Paediatric Cardiology?” The time was right. The negative detractors – identified at the time – could be ignored. So out of the bath to discuss with “nearest and dearest”, Walter Somerville. He was not amazed or impressed except to request that I dried myself in order not to wet his study carpet! I returned for discussion suitably clad. “Jane, there is no organisation to do this”. That's an advantage, I felt (and said) so I did not have to abide by irrelevant rules, and the grasping interventions of the International Federation of Cardiology. Then what experience did I have? Well, minimal, having organised the London meeting of the AEPC for Richard Bonham Carter and a cardiology meeting at Royal College of Physicians and a few courses. Disconsolate but not diverted, plans were made.

First to contact all one's friends in paediatric cardiology and cardiac surgery – the latter regarded as of prime importance as the group responsible for innovations had money and loved new adventures. The welcoming friends and colleagues in South and Central America, along with a few in North America – those who came to the AEPC – were enthusiastic. They agreed that there was a need to share and tell the world. Thus, the work began in 1975 for the Congress to take place in London 1980.

First, a discussion with Professor John Goodwin – a friend and President of the ISFC (International Society and Federation of Cardiology), to me a somewhat suspect organisation that controlled venues, organisations and finances for World Congress of Cardiology. Goodwin was interested in congenital heart disease and knew of the problems faced by rapidly developing paediatric cardiology. He gave the idea his blessing but nothing else, agreeing to discuss it with his committees and then send a formal view from the ISFC.

This appeared to be a good start. Next was to form our own small organising group designed to have short and minimal lines of communication, and thus efficient and cheap. We had a fax, telex, telegrams, and a telephone line, but no e-mail, texts, or computer. Professor Fergus MacCartney, a lovely man, spiritual and often vague, with whom I did a weekly outpatient session at Great Ormond Street Hospital (GOSH) agreed and later James Taylor joined when a treasurer was needed – obviously not at first as we had no money, nor an idea from where it might appear! I became the scientific secretary to oversee the scientific profile and programme. Fergus was to be the Secretary General. After outpatients, we met once a week to plan over tea. Money was squeezed from old or grateful friends and Ciba-Geigy and ICI were helpful. This allowed us to have a bank account, a legal constitution, and a few basics to initiate promotion and organisation.

The philosophy of the Congress was that cardiology and cardiac surgery had equal rights. A president was appointed – Dr Jesse Edwards, distinguished cardiac pathologist at Mayo Clinic – and two vice presidents – Gerard Brom from Leiden, Holland for cardiac surgery and Alex Nadas, Boston, USA – to demonstrate equal favours to each part. All accepted without asking for any support.

Next, an ideal logo was designed to print on the notepaper of the Congress and make it look official, but showing it was to be in June 1980 – a favourite month for London where the beautiful events happen. Designing the paper and logo gave credibility to an idea, which was all we had at this time.

The AEPC was told of the plan at the first council meeting of its annual meeting in Ghent in 1975 and asked to consider not having its annual meeting 5 years hence, so delegates could use their funds to support the London meeting. It was greeted by the council with incredulity, no enthusiasm, and some hostility. Who had asked us to do this? Why should the British do it? Why was the AEPC not asked or part of the discussions? Oh dear, the first setback and not supported by the vociferous British paediatric cardiologists. “But it's for real”, said one opinion, loudly voiced at the annual dinner as I passed by the table – “they have the notepaper!”

At the final general meeting in Ghent, more opposition from European members had been marshalled. Suddenly, Dick Rowe stood up, supported the idea strongly, and said, “Canada will be there”. The mumblings softened, and the meeting finished with at least support from Canada and the United States, and almost none from Europe.

Feeling sad, noticeably ostracised by friends Tom Losekoot (Holland) and Bobby Marquis (Scotland), I went to the airport, taking the train in the wrong direction, and returned to the United Kingdom to start the adventure. The Ghent experience had convinced me that the idea was correct and that the non-progressive AEPC, which I had clashed with on Council before, were wrong and archaic. I resigned from the Council, not wishing to take part in the usual “step-ladder” habit of rising through the various official titles until Presidency reached. The next was to find the venue, which was difficult as London had no dedicated conference centre. South Bank, where the ESC meeting was held in 1970, was unsuitable. Wembley was not finished. The Barbican centre would not be ready, and what was available had no contiguous exhibition space or enough rooms for simultaneous sessions to help raise money. The three organisers were driven to view Wembley – at least half an hour away, a tube station and few buses connected and a promise that it would be ready to hold as many or a few, as needed. We decided to take a chance, as there was little else unless we left London. Wembley proved to be far from ideal and was the source of a few nightmares and disasters as it had obviously been built without consulting audio-visual experts, acoustics, etc., not to speak of logistics of attendance.

An efficient homely conference service organisation nearby was engaged. Then came the next hurdle over languages. Good translation of medical scientific lectures is expensive and hard to find as they do not understand medicine and paediatric cardiology is complex in any language. Of course the first language had to be English because it was held in the United Kingdom. The second language – of diplomacy and conferences – was expected to be French, and had been in all international conferences. With the large support of Latin America and Spain, Spanish was chosen to be the second language. The French were angry and said the congress would be ostracised particularly by Parisians and certainly no more invitations to France for the scientific secretary. The Spanish, “my friends and brothers”, were pleased until they realised it was the “second” language and that plenary sessions had to be given in English. Response from Spain, acting as if the vice regency was still in place, to all the Spanish-speaking plenary and main speakers – surgeons and cardiologists from around the world – was a formal request from Madrid that each invited speaker from Spain and the new world insist on speaking Spanish in all their invited lectures. This would have created problems as 80% of the audience were English speakers and <20% were Spanish. Fortunately, the dictate from the mainland to the “colonies” was ignored. Everything possible was done for the Spanish speakers with a bilingual medically trained doctor in each room, large and small. However, this created serious unpleasantries in our medical community, which continued for me for decades from France and Spain but not Latin America, which mattered much more to me.

These problems were ignored. The main need was to build a good scientific programme to be as inclusive, innovative as possible and impeccably organised, so an experienced secretary who knew the field and persona was needed. Susan Stone, the maker and keeper of the database in the Heart Hospital, took on this job and made a memorable success of all that she had to organise, including the constant changes and demands up to the day of, and during, the congress. It took an obsessional idealist to maintain scientific exactness. She did it and was a tower of strength, and without e-mail or mobile phones.

The organisational structure was designed to have few committees, even less meetings to save money, time, and hassle. The most important guidance to and for me with much support was given by Bill Nelligan, exemplary Chief Executive of the American College of Cardiology, efficient, experienced, and so wise about organisation. Without such good advice, I doubt if the ideals would have ended with such success. Moral of the story – if you have a good idea or recognise a new need, get on with it and ignore the detractors and obstructers. (Accept that it might not make you too many friends, if successful). As things started to progress and the organisation grew with increasing enthusiasm from around the world, another bad blow was received. Fergus, the secretary general, called me urgently, having received a message from Professor John Goodwin that the chairmen of sub-councils of the ISFC had voted against having a World Congress of Paediatric Cardiology and that it would be unwise to proceed without ISFC support. Goodwin was not happy that this had occurred as he had given his personal support to the idea. It transpired that the main opposition had come from the sub-council on paediatric cardiology, chaired by a Dutchman Klaas Bossaena, a friend as I thought. In Vienna in 1975, he had campaigned amongst the chairmen of various ISFC committee councils and the members of the paediatric council to vote against the idea around the world. They assumed that would be the end.

Fergus wanted me to talk to Bossaena immediately and felt we must take this seriously. I did, a useless, expensive hour on the phone to Groningen did not change his view. Feeling somewhat like Stalin when threatened by the Pope's displeasure during the Second World War, reported to have said “where are his divisions?” After all, the ISFC had offered nothing other than interference and perhaps a little publicity, but not without some unidentified “quid quo pro”. I felt we did not need them, but Fergus, basically conventional except for his clothing, was very worried. I said we could manage and would go elsewhere for global recognition. By chance and good fortune, the lucky cards were “played” to me, and I was able to exploit the situation. I met the President of the International Society of Paediatrics (ISP), Professor Benjamin Schmidt, by the poolside in Rio de Janeiro and “made hay while the sun shone”. The ISP recognised the congress and (they) were flattered to be asked to our meeting, and I put ISP on the notepaper. In the end, Henry Neufield, President ISFC, came and we made an uneasy peace. They have never been involved with our congress. I thought that if another congress was wanted, our own organisation would be created, independent of World Congress of Cardiology, ISFC, etc., or any other global organisation. June, 1980 was identified but not designated “first” – as could have been the last or the only one. We were together enough and knew the subject and world, to organise what might be wanted.

Advice was needed about everything. An international committee with members from all regions of the world was appointed from friends acquired from invitations to many conferences. Those names were added to the notepaper to show recognition. Their role was to publish the congress in their geographical spheres of influence and alert the scientific secretary of interesting work and appropriate contributors. It was never the purpose that this committee should meet but merely to confer useful self-importance on the appointee, giving appropriate advice.

In addition, and most important, experts were appointed in the emerging sub-sections of paediatric cardiology, foetal, physiology, echocardiography, clinical, surgery, other heart diseases (geographic), neonates, etc. They were chosen from the world scene and used to build a comprehensive programme. Plenary session and main symposia speakers were invited without money or expenses, but told if money became available they would have as large a contribution as possible. Only two, one of whom was a renowned cardiac surgeon, made excessive demands for all expenses, first-class travel for his wife, as well as all costs, which could not be met; and another, a more distinguished and admirable founder of paediatric cardiology, did the same. They were quickly replaced with more willing and less arrogant contributors. I retain no regrets but still remember dark days, lightened considerably by the many equally distinguished who wanted to help and be part of the adventure.

Money was extraordinarily difficult to raise for such a small population of expected attendees, and relatively small numbers of patients compared to the big spenders of cardiology. The budget was based on 1100 paying delegates. Advances such as imaging technology which were to come, had not yet arrived; although the catheter and laboratory equipment was in demand, and manufacturers of vital valves for replacement, and makers of sutures and instruments responded to the requests of cardiac surgeons to support us. Help from pacemakers, 24-hour ECG tapes, and the emerging new echocardiograph machines contributed, but none as much as the powdered milk. Some pharmaceutical companies helped despite the relatively few pills they could sell to the group. We managed and spent as it came. Any surplus I quickly gave out a percentage of flights to the invited accepted speakers, having checked on round-trip costs. I felt a small reward for trusting us needed a sign of recognition. With reluctance, the careful treasurer agreed to the spending of £20,000, after the secretary general had promised we were in credit. This was distributed within 24 hours.

Within a week, another drama occurred as the secretary general, checking the figures he had compiled, discovered that we had not been in credit but in debit of £20,000! Somehow, he had put the figure in the wrong column! Maybe the good God, recently re-discovered by Fergus, had diverted his thoughts, and delayed discovery as talk about World Congress was not permitted on a Sunday when we all had free time. The need to raise money intensified and unusual sources were called upon and produced. I wanted a flag made with our logo, which would fly over Wembley during the congress; Fergus and James agreed reluctantly. It still flies at the Congresses. I am still pleased with that logo.

There was a lot to be done. Specific tasks and responsibilities allocated to willing helpers. Walter Somerville, the patient wise man, now very supportive having found that the congress would not take place in his home, took on the organisation of the opening ceremony. John Deanfield, his then house officer, looked after the band of Middlesex medical students who hosted and welcomed the congress delegates, answering all the questions from transport to nightlife in Soho and where to take a dog or the mistress. Patrizia Presbitero, a Fellow in training with me, always stylish and dressed in Valentino, was in charge of “liaison” with foreign invited speakers. Nick Taylor, my overworked registrar, took on transport. John Norman, the Heart Hospital's chief technician, organised the trade exhibition. The social programme was organised by the wife of the Director of the British Heart Foundation. The government gave us the glorious Lancaster House for a reception and sent Sir George Young, Secretary of State of Health, to speak at the opening. Renata Revel Chion from Venezuela was my personal translator, so any one could approach me in Spanish. Luis Becu, distinguished eccentric pathologist from Buenos Aires, completely bilingual because of an English nanny, was placed in charge of Spanish medical translations for all doctors; he translated for me at the plenary session, often filling in what I left out, or adding his own interpretation of what I said! My daughter, Kate, helped in the office and drove the distinguished to the conference centre.

And so the sun came out on June 1st, 1980; 1340 delegates came. They mastered the difficulties of getting to Wembley. Sessions were well attended. There were dramas with projection in the first plenary session where the main auditorium had “rear back” projection, the medical students’ identifying red shirts were stolen, dear Dick van Praagh had too many slides to cope with, Lucio Parenzan arrived, wanting instant announcement of his World Congress of Paediatric Cardiac Surgery in Bergamo. Aspirin was announced to be teratogenic. Azzolina (surgeon from Massa) wanted to hold a press conference with a planeload of Italian journalists. There was a battle from overcrowding, and a fire hazard was declared in the small auditorium where a session on single ventricle was held and lots of grumbles and threats to the Scientific Secretary. A few apocryphal stories emerged about what I would not do to allow entry to the room as I battled and cajoled to deflect the audience away from single ventricle to systemic hypertension in children.

Lovely things happened. Princess Alexandra opened the Congress and spoke personally to many with much warmth, at the opening reception. Besides the well-hosted reception at the elegant Lancaster House, there was a fun party at the Commonwealth Institute, a formal congress dinner at historic Guildhall in the City, and a final scientific session on the future was fully attended, with Nadas speaking on “Neonates”, Cedric Carter on “Genetics in Heart Disease”, Ritman from Mayo bringing the audience to standing ovation when he “opened” the imaged heart to see inside, myself on “Adolescents Triumphs and Disasters” and the need for “GUCH care”, and Aldo Castaneda on “The future of Cardiac Surgery”. It was a heady session, hastily followed by a closing ceremony of thank yous and Janet Ross (daughter of Donald) elegantly dancing on to present the flag to the next congress organisers in New York, 1985 – a triumvirate of Bill Rashkind, Mary Ellen Engle, and Eugene Doyle. There had been a buzz that another congress was wanted and needed for the inevitable progress; enthusiasm around the world justified this. A “steering” committee was quickly assembled for an early breakfast meeting of buns and coffee in the National Heart Hospital.

The flag was transferred and a huge cheer erupted at the impromptu final session – not tightly organised. New York Congress was held at the Waldorf where a strike ensued and the next delegates had to break through the picket lines. It was fun and sunny. Lucio Parenzan organised the first World Congress of Paediatric Cardiac Surgery in Bergamo in the summer of 1988, where Ferraris were on display at lunch. Arriving late from Paris, I met my loyal friends Anton Becker and Jan Quaegebeur and picnicked with them on a green verge. I learnt that the second surgical congress had been agreed to take place in San Paolo, chaired by Adibe Jatene. I felt this was a disastrous development to keep surgery and cardiology of congenital heart diseases apart. I rushed off to discuss with the President, John Kirklin. He agreed that it was a wrong way to go and asked to arrange for a meeting between three cardiac surgeons and three cardiologists. Thus, accompanying me, Welton Gersony, one of the few paediatric cardiologists present, and Chompol Vongraprateep, who was to host the next Congress in Thailand, met with Francis Fontan, J. Kirklin, and Adibe Jatene and agreed we should not separate. Thus was created the World Congress of Paediatric Cardiology and Cardiac Surgery. The venue was changed from San Paolo to Paris when Adibe Jatene became Minister of Health. Bangkok had already been agreed upon for 1989, so it was announced that the next and first joint congress would be in Paris, organised by Jean Kachaner.

We had regular ad hoc meetings of the steering committee, usually at the ACC meetings. This seemed to work amicably and effectively, with little cost. After Paris, Welton Gersony, in 1989, wrote the by-laws as the general feeling of the committee members was that we should appear to have a structure, if only for the future. It was also laid down that we should have equal membership of surgeons and cardiologists. With the arrival of interventionalists as important, it would seem the time to consider restructuring the steering committee.

Paris was due to be followed by the Congress in Japan. Following the ravages of the devastating earthquake, the Tokyo group led by Professor Imai relocated it without discussion to Hawaii. This was a big success and a charming, happy meeting. The next was in Toronto 2001 and at the steering committee meeting, with rather irregular membership bringing “friends” to vote, Argentina “lost” to Brazil by 1 vote, for the 2005 Congress. It was clear that Rio de Janeiro was unsafe and the expected congress centre had not been built. Those of us who had “suffered” at the World Congress of Cardiology in Rio, and 2 hours to the centre vowed to not return. Argentina was asked if they would take over. Buenos Aires 2005 was one of the great meetings with enthusiastic delegates, very good organisation and a space, somewhat small for the large influx of late registering delegates from their continent, memorable for tango and huge steaks. In 2009, a magnificent job of organisation was done for Cairns in Queensland, somewhat out of the way and difficult to reach. And so we wait for Cape Town, South Africa 2013 – a beautiful venue with great food, flowers, and sunshine.

The World Congress of Paediatric Cardiology and Cardiac Surgery has survived with minimal assets and simple organisation. Each congress is special, taking on the humour, flavour, and culture of the organising country. It is hard work for a few organisers and money is hard to raise. The steering committee works closely, fairly, and successfully, and even though accused of being secretive and effete that does not matter. It is efficient and produces successful, happy world congresses, where all involved with the speciality are welcome. With so many “grown-ups” with congenital heart disease, it is no longer just a paediatric problem – maybe the name of this congress must change again. Regardless, the flag must fly on.