January 31, 2018

It’s a month we lost

Eduardo E. Castilla

a great researcher, a great organizer, a great man, a great friend

we will daily remember him, we will always miss him


The day after the death of Eduardo E. Castilla (December 31, 2017), Elisabeth Gnansia (former director of France – REMERA Program) proposed to prepare a tribute in his memory, involving his closest Clearinghouse friends, who had opportunity to know him outside the professional activity.

We decided to collect only non-professional memories, because the research, organizational and Clearinghouse activities of Eduardo E. Castilla are well known and documented on:

  • PubMed (accessed January 25, 2018): 266 papers
  • ECLAMC website http://www.eclamc.org/eng/index.php
  • history of the Clearinghouse: Member since 1977, Chairman for 10 years in different years from 1983 up to 2011, ICBD Director in 1994, and winner of the Distinguished Service Award in 2013

Photographs and Memories of closest friends are here collected. The result is only a cent to draw the polyhedrial personality of an unforgettable great friend.


The first time I met Ed

The first time I met Ed was in Strasbourg (France), in 1982. He had missed the Clearinghouse meeting in London, because of the Malvinas war. We were attending the same session of the meeting of “Institute de la Vie”, where I presented my data about the association between spina bifida and valproic acid (VPA). My dear French colleagues wanted to deny the existence of such association, although Pierpaolo presented two further cases of association VPA-Spina Bifida.

Suddenly a stentorian voice simply said “she has not invented the data!” I badly needed support at this stage, and here he was, this man I had never met before.

Elisabeth Gnansia (former Director of France – REMERA Program)


I first met Ed at the ICBDMS meeting outside Budapest in 1978 when I was a guest while working in London that year with Josephine Weatherall. As a foundation member of the Clearinghouse, Ed knew everyone there and recalled vividly its origins. Initially, he seemed a little aloof in his manner and stature but I admired him for his intellect and subtle humour.

Paul Lancaster (former Australian representative at ICBDMS)


I first met Eduardo when I was preparing my Doctoral Thesis. He introduced me to the study of birth defects. My department’s director enabled my scientific stay in his center in Argentina, and with his help, when I came back home, my Thesis was almost finished. Also, while visiting his center, I had the opportunity to better knowing ECLAMC, and I realized that I could organize a similar program in Spain, that 42 years later still operates. We have further shared friendship, and he even visited my family in the small village in the South of Spain where I was born. I will always remember him.

Maria-Luisa Martinez-Frias (Founder and former Director of ECEMC Program in Spain)


I first met Eduardo at the Bergen meeting of the Clearinghouse.He was chairing the meeting when I arrived; I said who I was and that I was representing Canada (Alberta was not a member at that time).Ed was very gracious and said “since you have come such a long way, you are welcome to stay but Canada has actually been expelled some time ago for non payment of  dues”. I had a very nice friendship with Ed and we exchanged emails a number of time about policy and coding issues hich were very helpful to me.

My former mentor and chief-the late Jim Miller thought very highly of Ed. Jim was also one of the founding members of ICBDSR.

Brian Lowry (Alberta Congenital Anomalies Surveillance System)  


The first time I met Ed was in 1980 at the 7th Clearinghouse Annual Meeting  in Stockholm (Sweden). I was there as Director of the Italian IPIMC. My English was much worse than currently. Ed understood my embarrassment and said: “Don’t worry my mother comes from Gattinara (Piedmont-Italy) I can understand a little of you Italian”. We had a beer and a cigarette together (it was the last time I saw him smoking, quit few months later).

Pierpaolo Mastroiacovo (Director of  ICBDSR Centre)


Probably all of you remember the movie “The Accidental Tourist” with William Hurt. The protagonist is a writer of tourist guides. There is this formidable scene where William Hurt explains how to make the “perfect luggage” for a long distance travel. I am sure that Eduardo collaborated in writing this part of the screenplay. He was the undisputed master of making luggage. I have been working with Ed  at ICBD for three years and when I met him for the first time in Rome, he had just arrived from Buenos Aires. He brought with him a sort of 24-hour suitcase. I cannot imagine  that small bag was all he brought from Baires for his one-month stay in Rome.. Surprisingly in his small bag there was everything you need for a one-month stay, everything was accurately folded. The real “accidental tourist”.

Aldo Rosano (former statistician of ICBDSR Centre)


Ed was a specialist to condense in a few words a long story
One day he told me that he was dividing his time between Rio and Buenos Aires. I was impressed, I hardly could imagine such a life, 30 years ago… Then I asked : “where are your clothes?” He answered “in my suitcase”.

Elisabeth Gnansia (former Director of France – REMERA Program)

In 1991 at the Clearinghouse Annual Meeting  in Canberra (Australia) he was supposed to present the Clearinghouse to the assembly. He took the so called “Green Book”, just printed, and said “everything is in it”

Elisabeth Gnansia (former Director of France – REMERA Program)

In 1992 at the Clearinghouse Annual Meeting  in Atlanta (US) Ed had been asked to speak about NTD and “race”. He started his presentation saying: “My presentation will be very short because I don’t know what a race is”

Elisabeth Gnansia (former Director of France – REMERA Program)


To explain me what Argentinean people look like Ed said: “We are Italians, speak Spanish, and believe we are British”

Pierpaolo Mastroiacovo (Director of  ICBDSR Centre)



Ed was an intellectual man

So many memories of Eduardo’s life and gifts, so difficult to choose. But one summarizes several. When he was ICBD director in Rome, we ended up talking one day about Dante and Borges, as I recall two of his favorite authors. Both complex yet direct, and able to say so much so clearly in so few words.  His emails were like this – short, clear, straight to the core of the issue, and often with a twist that made you think again.

Lorenzo D Botto (ICBDSR Distinguished Service Awarded in 2016)


Back to the story. In talking about Dante and Borges, he told me about a book (which of course I had to get) by Borges on Dante, ‘Nove Saggi Danteschi’ (the translation of  Nueve Ensayos Dantescos, 1982), and published by the Franco Maria Ricci. Now, this publisher is one of a kind, and specializes in small printings of exquisitely elegant and refined editions.  I think it was the most expensive  208-page book I have bought (especially as a poor research physician on a scholarship).

But I did, and now it reminds me of Eduardo, this book elegantly written by a great mind about a great mind, a tribute to intelligence clothed in beauty.

Lorenzo D Botto (ICBDSR Distinguished Service Awarded in 2016)


At an annual meeting of the ECLAMC in Angras dos Reis some years ago, I presented a case of hydrops fetalis, whose etiologic diagnosis, later confirmed by laboratory studies, was suspected by careful analyses of his family history and clinical signs. Eduardo approached me after the session and told me that he had enjoyed the presentation mostly because he felt that we do not sufficiently emphasize the importance of the family history and the value of a detailed physical examination in the evaluation of patients with congenital anomalies. And he added, “I consider this to be so important that I’ve started to reread Tiburcio Padilla’s Semiology from beginning to end.” For those who are not familiar with this opus, it is a 10-volume treaty on General Semiology and Semiology of the Organ Systems that was a required resource in our early clinical days in medical school. Only and avid reader and a devoted scientist like Eduardo could tackle such an endeavor!

Jaime L. Frias (Former NCBDDD Consultant and Collaborator of the ECEMC Program)


Ed used to read only great books. Once I asked him: “Which are the 7 best books you have read”?, his answer was:  Dante Alighieri: La Divina Commedia, Gabriel Garcia Marquez: Cien años de soledad; James Joyce: Ulysses,  José Saramago: História do cerco de Lisboa, Mario Vargas Llosa: La guerra del fin del mundo, Jorge Luis Borges:  Nueve ensayos dantescos, Julio Cortazar:  Rayuela. We read some of them at the same time and it was a real pleasure to exchange opinions and feelings.

P.S. – 1  Ed spoke fluently: Spanish, Portuguese, English and Italian, and he loved to read books in original language.

P.S. – 2 Ed, as a geneticist made the full pedigree of the Buendia Family narrated in “One hundred years of solitude”.

If you are interested to have a copy of it, ask me.

Pierpaolo Mastroiacovo (Director of  ICBDSR Centre)


Eduardo was a real polyglot. He was perfectly fluent in three languages: Spanish, Portuguese and English. The problem was that he was convinced to be perfectly fluent in four languages, including Italian. When he realized that Spanish and Italian have many similarities, but less than he could realize, he took a full immersion course of Italian at the “Dante Alighieri School” (the best in Rome to learn Italian).  Ed was a perfectionist.

Aldo Rosano (former Statistician of ICBDSR Centre)


Some of the polyhedral Ed’s characteristics

“In 1987, when I started working with Dr. Martinez-Frias in the field of birth defects, I saw a lot of interesting papers written by Dr. Eduardo Castilla. I was impressed by the magnitude of his program and by all the results that they had already published about it. Looking at all that with some perspective, I clearly perceived his outstanding mind. A bit later, he visited our program when we organized in Spain one of the Annual Meetings of the Clearinghouse. And then, just looking at him, I was impressed by his fascinating points of view. He had the ability to make simple what other people managed as really complex. It was many years later when thanks to the email we could share work and some friendly and funny chats. Here an anecdote of those chats. He used to underline the beauty of jacaranda trees in Buenos Aires, up to the point of selecting some dates for our Annual Meeting there depending on the time of their blooming. I agree with him that it is really spectacular. In one of the chats in Spring some years ago, I mentioned that there is a jacaranda tree close to my home, and this brought him to my mind every day. So he decided to name himself as “the jacarandous man”. So, every Spring we will remember him when the jacaranda tree blooms, every day we will remember him when making some literature search and his name will be among the listed papers, and always will remember him as the friend he was for us. The World is a bit lonelier without you here. Thanks for making our World better. Thanks for all, Eduardo. Also for the inspiration.

Eva Bermejo-Sanchez (former officer and  chairwoman of ICBDSR, current Scientific Coordinator of ECEMC Program in Spain)


Eduardo had a keen sense of observation and sharp logical thinking, which were evident in both his professional and his daily life. I remember a display of these talents that I witnessed when we were both attending the meeting on congenital anomalies organized by Professor Marois, from the “Institute de la Vie,” in Strasbourg in 1982. One of the first days, Eduardo and I walked together to the dining room at lunch time. This was a beautifully appointed room with tables for six and tables for eight guests. As we entered the room, Eduardo quickly told me, “Let’s seat at a six-person table.” When I asked him for the reason, he said, “Look carefully. All tables, large and small, have two bottles of wine. And two divided by six is better than two divided by eight!”

Jaime L. Frias (Former NCBDDD Consultant and Collaborator of the ECEMC Program)


Ed was very interested in the longitude and latitude of several sites and following the phases of the moon. Why? My interpretation is that he was the kind of man with his feet on the ground but a visionary too.

Pierpaolo Mastroiacovo (Director of  ICBDSR Centre)


I found a few photographs of Ed with a “big smile”, his was often half-hearted. Why? My interpretation is that Ed had always his strong critical spirit switched on, even towards himself.

Pierpaolo Mastroiacovo (Director of  ICBDSR Centre)


I remember Eduardo as just a terrific human being with a wonderful sense of humor.  I think he was once at CDC giving a talk and he thanked me for teaching him to use his floor as a file cabinet.  I don’t know if was just to joke with me or if he actually followed my habit of having papers stacked all around.  He was also debonair. I enjoyed have a meal in Italy in which he enjoyed having a egg cooked in his hot pasta.  I had not seen this before.

He was a champion in getting folic acid fortification in Brazil.

Although known from his professional record, I would like to note that he was a genius in designing birth defect surveillance in low resource setting.  I think there are many countries where this model might be copied as it was done in Spain and Mexico.

Godfrey P. Oakley (former Director of Metropolitan Atlanta Program at CDC)


In 2000 I spent ten days in Rio de Janeiro. I stayed at  Eduardo and Ieda’s home. I was treated as a son.  Eduardo was a friend, a mentor, a great man.

Aldo Rosano (former Statistician of ICBDSR Centre)


Eduardo Castilla was introduced to me by mutual friends, during one of his frequent trips to Rome. Then, I met him again in Europe and Americas several times. Our friendship was based on mutual sympathy; from the beginning I appreciated his great culture, curiosity and sense of humor. During my visit to Buenos Aires, he was a precious guide in the places linked to Borges, a writer we both loved, helping me to better understand the Argentine spirit that transpires from his pages. The last time he came to Rome, knowing my passion for the architect Le Corbusier,  he gave me a DVD of a movie entirely shot in the “house of Dr. Curutchet” in La Plata, designed by Le Corbusier, that I visited during my trip in Argentina.  I think of Eduardo with nostalgia, he is one of those people with whom I wanted to spend more

Roberto Veneziani  (a friend, often present at ICBDSR Annual Meeting)


I did not know well Eduardo – I do not even know his nickname (nobody who is a ” Porteño” lacks one). Nicknames are aquired early and focus on salient points of character. As you know, Eduardo and I as well as Victor Panchaszdeh and Osvaldo Mutchinick have roots in the same medical school – what impacted us to pay attention to human maldevelopment issues is a mystery deserving consideration – there is something in our medical background combined with the high and unique culture of Buenos Aires has impacted our lives. I believe, it is a fact that in any  international forum the body language of Eduardo immediately identified him as a Porteño, which certainly is not synonym of Argentinian. This probably is not so regarding Victor, Osvaldo or myself. Eduardo was a polymath, his interest transcended the immediate or the narrowness of specialization – he was a humanist – realist – leader and a patriot uncontaminated by nationalism. His impact on many who follow his footsteps today is beyond dispute.

Wladimir Wertelecki (Director of  OMNI-Net  Ukraine Birth Defects Program)


Ed had a terrific memory. He could remember quite well the ICBDSR history, better than anyone, but the most impressive evidence of his memory was when we played to remember the code of malformations.  Both, he and I, were responsible for the coding of malformations in our registries, one said the name of a malformation and the other had to say the code. He was always the winner, I underline always.

Pierpaolo Mastroiacovo (former Director of IPIMC Italian Birth defects Program)


I’m not able to remember when I met Eduardo for the first time, since it seems to me that he has always been present in my life, ever since I started working in the common field of birth defects surveillance: I was very young then, and this imposing man, with such a strong character, so cultured and cosmopolitan, impressed me a lot . Over the years I have enjoyed his company more and more, especially during travels, both for business and holidays  (he was an exceptional traveling companion). We spent a lot of time together during his frequent stays in Rome, but especially when he was director of the ICBDSR Centre in Rome: it was a pleasure to work with him. So, it is impossible for me to mention a single memory. Too many memories, and all worthy of being remembered. Ciao, Eduardo.

Simonetta Zezza, ICBDSR Coordinator


A personal anecdote about an influential giant both as a person and as professional.

Eduardo invited me for an ECLAMC-meeting in Rio de Janeiro and knew that I enjoyed the tango. Before visiting Rio, he asked me to give a presentation in Buenos Aires. He, himself, could not be present. Thus, he asked one of his many friends to be my host in the city. This became a remarkable and fantastic experience visiting the most famous, legendary and renowned tango places of Buenos Aires. My host told me afterward about Eduardo’s directives: Eduardo called him announcing my stay and desire enjoying the Argentinian dance. He gave an explicit command that the host did not know enough anymore about the tango and had to organize somebody more qualified. Enrique Gadow (host) neglected this and went his own way. Hence, and perhaps typically for Eduardo, with this for Enrique annoying and challenging remark, he obviously stimulated the perfect visit for me to his beloved Buenos Aires.

Paul Peters (former Director of ICBDSR Centre)


Do you want celebrate Ed?

Have a dinner starting with a dish full of various types of ham, salami, and cheese, and… drink a glass of Gattinara wine. It was his favorite dish, he was so happy.

Pierpaolo Mastroiacovo (Director of ICBDSR Centre)

Ed’s selected pictures