6 building mini-challenges for educators in Second Life

June 23rd, 2010 • MUVEs • No comments

During the MUVEnation programme, I often heard: ‘I’m an educator, I don’t need building skills! There are a lot of freebies out there!’ To this I always explained that even educators need to know how to interact with objects without frustration or fear to destroy everything. That when we use a classroom or display objects inworld, we need to be able to apply simple modifications, position and align comfortably objects in the space.

For this purpose, I have created, in April 2009, a series of mini-challenges aimed at developing basic skills, necessary for building (or better putting things together) in Second Life. I wanted to exploit the advantages of: a) micro-learning by creating activities that could be carried out in just a few minutes; b)    learning by doing and exploratory learning by designing activities that achieved through practice and which solutions had to be “found out” by the learners themselves; c) self-paced learning by giving total freedom to participants to carry out the activities in their preferred rhythm and order; and finally d) create a (sort of) playful learning experience.

The mini-challenges were structured as follows:

• One evocative and short title
• One image that shows what has to be achieved by the student: the image of the challenge.
• One simple instruction about a task to perform which evidence of performance can be shown by the students in a screenshot With eventually, a question.
• Finally, a set of resources that would help the student to solve the mini-challenge, if required

I published each mini-challenge in a dedicated forum, and asked the participants to reply with the visual evidence of their performance. I loved designing these mini-challenges and the participants enjoyed doing them. And I have received positive feedback about them:

• “Marga this is an excelent approach to get the teachers ready with the SL basis. I enjoyed it a lot! The exercises are easy and fun, the overhead comes when you have to take the picture, upload it to flicker, get the code for the medium size and create your record here! Nice idea!” Max Ugaz
• “Thak you very much for the opportunity Margarita. The tasks are very simple. At the beginning they look somehow challenging especially for a newbie like me. But I manage to master some skill by attending workshops given either by MUVEnation colleagues or other instructors in other regions inworld. I see these are the basics.” Hamid Mernaoui

I only wish I have realised how successful this approach was and have used it to design the activities of the introductory course!

Here my first 6 mini-challenges. I have been asked permission to re-use these mini-challenges in other teaching contextsAnd I have happily accepted. These challenges are released under Creative Commons, by attribution, non-commercial. If you build upon this work, remix or translate it or even build extra mini-challenges like these, please share! I am also happy to share the verctor files I used for the keyboard and mouse in the pictures.

01 – How to take snapshots of your interface?

Take two photos of your interface with your avatar facing the camera:

• the first with the snapshot button
• the second showing the snapshot window, by using the Screen print key of your keayboard

Put the photos on your Flickr account and post it here, in medium size, as a reply to this discussion.

02 – I go nuts when I see all these numbers

Create 4 boxes on the ground:

• The first will be a perfect cube with size at X:1.750, Y:1.750, Z:1.750
• The second will be a large prim X:3.250, Y:3.250, but with Z:0.750. Mind the dot!
• The third will be a tall and thin prim X:O.950, Y:0950, Z:4.500
• The Fourth will be a wall X:0.200, Y:3.000, Z:5.000

If your prims with the modification get half buried in the ground, then lift them up by pulling the blue arrow. Now guess! What are all these numbers for? Which coordinates X, Y, Z help you to make an object larger? Which help you to make an object taller?

Want more?

• Opening edit tools – Second Life Video TuTORial QUICKTIP
• Learn building at the Ivory Tower of Primitives
• Strongly advised: The 1-prim barstool trick – Second Life Video TuTORial (If you manage to make a barstool, sit on it and add it to the photo)
• For a quick overview on building: Building is Second LIfe

03 – One meter higher please!

Take a photo of the 4 prims created during challenge 02, but positioning them precisely on the space, in the MUVEnation sandbox

• First prim, the cube, at position X:135, Y:205, Z:25
• Second, the large prim, at position X:138, Y:205, Z:26
• Third, the thin and tall prim, at position X:141, Y:205, Z:28
• Fourth, the wall, at position X:143, Y:205, Z:32

Now guess! What does the black bar with numbers in the upper part of the screen indicate? If someone asks you to put a box a little bit higher, which position coordinate do you have to change: X, Y or Z?

04 – Remind me again: How do I duplicate an object?

Take a photo of 10 walls, their size is X:0.200, Y:3.000, Z:5.000. You will have to make the first wall and then reproduce the others 9 horizontally. To duplicate just SHIFT+click+drag on X. Once finished, make sure that all your walls are spaced horizontally, 0.500 between them! What? Aha! Work out how you do this by increasing your horizontal position!

Now guess! Which coordinate do you have to drag to duplicate a prim vertically? How do you make sure that your objects are positioned precisely at 0.500 from each other?

Want more?

• Go to the Duplicating prims station in the Ivory tower of primitives at http://slurl.com/secondlife/Natoma/176/196/26
• Shift-drag to copy objects – Second Life Video TuTORial
• Copy prim
• Building in second Life Basics 4: duplicating objetcs

05 – Rotate that prim and show me the East!

Take a photo of a wall with size X:0.200, Y:3.000, Z:5.000, with the initial rotation at 0, 0, 0, when you are rotating it to the East. Your photo must show the rotation circle on Y (green) around the object and the related grid with East and West positions. Final rotation should be 0, 90, 0.

Want more?

• Go to the Rotating prims station in the Ivory tower of primitives at http://slurl.com/secondlife/Natoma/161/171/26
• Rotating a prim: http://www.youtube.com/watch?v=sHSSfCRPIZ0

06 – Under the grid

Rez two boxes, standard size in the sandbox. Sit on the first. And put the second one at Z:24.500, then rotate on X it at 225. Activate the local ruler mode and make it visible by touching the green/orange position ‘sliders’ (or tiny triangles or whatever you prefer to call them). Take a photo of yourself under the grid!

Now guess! What are the differences between world and local grid? Why the local grid is useful?

Want more?

• How to use the building grid – Second Life Video TuTORial
• Using the Grid in Second Life for Prim Placement
• Reference ruler & grid – Second Life Video TuTORial QUICKTIP

The Holodeck versus the Builder’s Buddy script: 3 teacher’s point of view

June 23rd, 2010 • MUVEs • 2 comments

Last year, during the MUVEnation programme we explored different holodeck technologies for the design and deployment of flexible learning scenarios inworld. Amongst these, we focused in the 2in1 Production Holodeck by Inside This World and the Builder’s Buddy Script by Newfie Pendragon.

Professor Shirley Williams, from The University of Reading, led this process and developed herself the tutorials that we first used in the course:  Building with limited space, Workshop on using the Builder’s Buddy Script, Unpacking your Holodeck, and Putting content inside your Holodeck. She also blogged about it here: Holodeck: first steps at production and Builder’s Buddy First workshop

The participants found the process particularly challenging. We even had a collection of Holodeck horror tales in a dedicated forum! But despite the complexity, 50 participants effectively engaged in and completed the production of their learning scenario with either the holodeck or the Builder’s Buddy Script. To support this process, I have also developed a detailed visual tutorial of the 2in1 Production Holodeck that can be found here: Creating a simple scene with the Holodeck!

The release of these tutorials launched an interesting discussion about pro and cons of the 2in1 Production Holodeck for educators and its comparison with the Builder’s Buddy Script. You will find here 3 teacher’s point of view about their use, all based in personal experience of the tools: Jaime Álamo Serrano, professor of chemistry at the University of Valencia, Spain; Nergiz Kern, English language teacher in Turkey, presently completing a MA in Educational Technology and TESOL at the University of Manchester; and me!

For Jaime, the main criticism was related to the conceptual differences between exterior and interior scenes that are not so clear:

I would add that the difference between exterior and interior are not so clear. For instance, to say that a house is the exterior and the furniture is the interior is very restrictive idea, because you cannot ass more interior scenes as any new replaces the former. Instead think of ‘exterior’ as what will be permanent and not changed accordd different ‘changing’ (interior) scenes. Another example: think of your classroom. Some furniture will be always the same, but in each day or session you’ll use specific scenes for the topic of that class. You need different interior to practice different sets of vocabulary, botanical species, architectonic samples, and so on. So that part of the furniture, educational tools and other parts being always there should be ‘exterior’. A kitchen, another example, will have different foods each time you teach how to cook. These changing foods will be the interior.

In relation to using the Holodeck versus the BB script, Jaime’s opinion is that:

The Builder’s Buddy is much more customizable than the Holodeck. It’s open source and free.

Also the BB rezzes the components more precisely and much better than with the Holodeck

Also the BB has the possibilities to Reset and Record again  that the Holodecks lacks.

In addition when using the BB you can nest several levels of BB scripts. When using the Holodeck, only two (interior and exterior). Besides the BB provides a much nicer and intituitive menu system.

Finally, the only issue is that you have to learn to handle the channels.

My opinion is that:

• The process of using the BB script and the Holodeck are close: making scene, putting scripts, taking back, recording position… However using the holodeck is more complex. Once you learn one, the other won’t be very difficult to learn.
• On the other hand I find the holodeck, once you’ve learned how to use it, quite practical, in one single object you have all the scenes you need.
• I agree: “the Builder’s Buddy is much more customizable than the holodeck. It’s open source and free”.
• I agree: “Also the BB has the posibilities to Reset and Record again that the holodeck lacks”.
• I agree: “Using the BB you can nest several levels of BB’s. Using the holodeck, ony two (interior and exterior)”. But I still prefer the Holodeck menu, because it offers all in one.
• Finally what I really prefer in the Holodeck is the easy way to be used by visitors and owners with different set of rights , without touching the scripts.

One issue that came often during the MUVEnation programme was the complexity of using the Holodeck. I’ve received requests for help and even complaints about people who could not use the Holodeck because it was too difficult. At the time, some of these people were not yet able to position correctly a platform or a door, to modify alone a simple script, or even to retrieve the Holodeck object in their inventory or to send a landmark to another resident’s profile. Without any doubt using the Holodeck is much more difficult than using the BB script. And in the Holodeck’s user manual, it is clearly stated that the Holodeck is for people who have two months of building experience.

But what concretely is two months of building experience for an educator? In helping the students to understand and use the Holodeck I observed that those who succeeded were confident inworld and were capable of 1) managing their inventory and retrieve perfectly any element within; 2) positioning precisely objects in the grid; 3) editing the basic features of these objects using the camera independently of their avatar’s position.

At the time of this discussion, in April 2009, Nergiz Kern’s opinion was:

So, on one side we have the issue with building skills. You need to have some basic building skills as you mention. You don’t need to really now how to “build” from scratch, though. The scenes most of us built are made up of freebie objects like chairs, boards, tables, etc.. So, you only need to be able to move them and position them where you want. The only scripting skills you need for the BB script is to be able to open a script, modify and save it. For simple scenes (that are not nested), the only thing people will need to change in the script is the channel number. The version we are using, makes changing other settings easy, too. On the other side, we have the different tools, namely the holodeck(s) and the BB script. Which is easier, more intuitive and more practical? I think we can’t anwser the more practical question clearly because a lot will depend on your needs and the purpose of the scene. If you, for example, need a shell, a holodeck can be easier because it provides you with ready shells that you can, then, modify according to your needs. In order to build shells with the BB script, you need to have good building skills and it will take time. I agree with Marga, that the holodeck allows you to have everything in one place/prim with a nice menu to select the scenes you want. On the other hand, I can easily hand out the boxed scenes made with the BB script. Holodecks, because they are commercial products, have some important limitations regarding permissions. I am not quite sure yet how far these go but this makes them less useful for educational purposes, especially when you want students to work together or don’t have the money to buy everyone a holodeck. Regarding ease of use, there seem to be huge differences between different holodecks. I have unpacked, rezzed and browsed through the scenes in the Production holodeck, unpacked the scripts, etc. But reading the long instruction and reading all your “horror” stories, did not make me want to use it. Around the same time, I was provided with a Horizons holodeck. And I have to say, creating a scene was very easy, even easier than with the BB script. There is only one script and the moment you put it into an object, it’s position is recorded. It’s also much cheaper then the Production holodeck. Another advantage is that rezzing and clearing scenes is much easier, also changing permissions from private, to public or group. When rezzed, the holodeck looks like a disk which is easier to click on than a small wall pannel. It has a small wall pannel, too and even a HUD to control it, when this is want you want. There is only one problem that I have to find out about. Once you create a scene and save it, it becomes unmodifiable which is a complete nuisance if you want to change a scene or even only rename it. My conclusion is that the BB script

• is easy to use once you have used it a couple of times and practised by creating mini scenes,
• It doesn’t cost anything,
• you can easily share your creations
• you can be creative with the box. It can come in all kinds of shapes (Nick/Corwin showed me one that came in the shape of a rucksack which had a picnic scene in it).
• The nesting allows for complex structures. Again, it was Nick I thik who showed me a kind of pyramid. Each time you clicked one level the next appeared. Great for presenting something in a gradual way.

If you have a folder in your inventory with all the boxed scenes, it is not much more difficult or time consuming to drag out the scene you need than to rez your holodeck and select the scene from the menu. Also, sometimes, you might not want others to see all your scenes. You could have differen copies of your holodeck for this but then it gets complicated again. If you want all your BB scenes in one place, you can create a picture board like you did, Marga.

Nergiz has also extensively written about her experiences using the holodecks for education in:

• Building holodeck scenes in Second Life
• Holodecks and language learning
• Holodeck or Builder’s Buddy Challenge

And you, Holodecks or Builder’s Buddy Scripts, what do you think?

Creating a simple scene with the Holodeck!

June 23rd, 2010 • MUVEs • 1 comment

Last year I created a 10 pages visual tutorial*, with Comic Life, about using the 2in1 production Holodeck from Inside this world. At the time, it was carefully reviewed by my colleague and friend Jaime Álamo (Professor at the University of Valencia), but I never had time to integrate his changes to the tutorial and release a new version. This has been done now. You can download the PDF file here. Enjoy!

*At the time of the production of this tutorial, many teachers asked me how was it done. Here some information about the process: the visual tutorial was made from the experience gained during the workshop to my own students. It took me 32 hours of work. This included in particular: the review of the complete documentation of the holodeck, writing the story board/scenario, testing the instructions, 50 snapshots taken inworld to illustrate each of the steps of the tutorial, preparing the layout and putting together the objects (photos and text) into Comic Life.

Invited artists to the JKPP drawn by me… with the iPad

June 11th, 2010 • Au fil des rencontres, Julia Kay's Portrait Party • No comments

These portraits are drawn with the iPad and belong to the Julia Kay’s Portrait Party: www.flickr.com/groups/portraitparty/

Putting children first: a design pattern for parents and guardians who publish online images of their children

June 11th, 2010 • Moi Numérique, Technologies sociales • 1 comment

Please, no more photos…, by Paula FJ

Summary

This pattern highlights the tension between personal online identity authoring and the responsibility we have towards others when their identity is enmeshed with ours. Specifically, how parents and guardians mitigate the risks associated with publishing online images of their children and the resulting contribution they make to a child’s digital identity.

Authors*

Margarita Pérez García, Steven Warburton, Phil Archer, Josie Fraser, Sally Griffin, Jim Hensman, Mark Kramer, Finbar Mulholland, Leon Cych, Jonathan Poole, Mira Vogel,  Yishay Mor. *Please ensure that the full development history remains with this pattern so that all authors are acknowledged.

Problem

Photographs have an important place in presenting, reflecting and understanding our identities, and in preserving our memories. The ease of capturing digital images combined with the proliferation of social sites and services for publishing them online make it is simple to share such content publicly on the Internet.

Parents and guardians who create an online identity that includes images and text about their children inevitably contribute to their children’s online presence. Parents and guardians can unknowingly participate in the construction of the digital identity of dependents who subsequently have little control over how they are presented or who they are presented to.

Whatever the reasons or justifications for the online publication of these images, the problem remains. An online picture of a child that is posted on the Internet contributes and/or interferes with that child’s online identity before they understand the implications and are able to build and manage their own digital identity. At worst these images can present a series of risks that need to be mitigated:

• Potential for abuse – this can be via cutting and pasting images, editing images or changing the context within which an image is viewed.
• Access to personal information – images can be used within flaming, stalking and cyber-bullying type behaviours.
• Identity theft – too much personal information can accidentally be made visible and lead to identities being stolen.
• Attraction of unsolicited communication – this could be to a parent or child represented in a given image via the online service in which the image resides, but this could also translate into tracing a person in the real-world if geotags (geographical identification metadata usually consisting of latitude and longitude coordinates) have been used.
• Misinterpretation – information may be inappropriately represented, errors amplified and false conclusions drawn, for example when images are taken out of their original context and aggregated into pornographic collections.
• Interference – images that persist over time have the potential to affect their adult life for good or ill. The created identity can interfere with the identity the children create for themselves in the future that will evolve over time as they play with their identity.
• Potential embarrassment of children in the short, medium and long term.

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Invited artists to the JKPP drawn by me

May 3rd, 2010 • Au fil des rencontres, Julia Kay's Portrait Party • No comments

These portraits are drawn with the iPhone and belong to the Julia Kay’s Portrait Party: www.flickr.com/groups/portraitparty/

I have more than 100 portraits to paint! These are my first 22 so far (Flickr names when real names of the artist are not available):  Julia Kay, dolores666, FlickChick2, viavisconti1, Patricio Villaroel, Jerry Waese,  Anne Watkins, Marina Mozhayeva, Andrew Mirzoian, Mariah O’Neill, Gila Rayberg, Martin Beek, Barry Farmer, Rita Flores, razor_nl, Roger Lee, Murilo S. Romeiro, Cloudbuilder, NC Mallory, RK Schlueter, Monica Machniewska, and Andy Donohue.

Portraits by invited artists to Julia Kay’s Portrait Party

April 29th, 2010 • Au fil des rencontres, Julia Kay's Portrait Party, Moi Numérique • No comments

In Julia Kay’s Portrait Party, one has to make a portrait, drawn or paint, of all other invited artists, so far 155 from over the world. In few words: you paint everyone and everyone else paints you. These are, so far, the many portraits of me can be found in my Flickr galleries at http://www.flickr.com/photos/margaperez/galleries/

How does the isolated upper sternal cleft impacts on child’s growth?

April 8th, 2010 • Fente sternale, Pourquoi ça n'arrive qu'à moi? • No comments

I have written in French over the past 4 years about my daughter’s condition with the hope of helping other French speaking families with the lack of open access to scientific information about sternal cleft, but also to share personal information from a parent’s point of view. For the first time however, an English family contacted me asking if my daughter has struggled at all with respiratory issues when she has caught colds, etc. And also if I have you found there to be any other side effects of the condition that have impacted her growth?

What I can say is that all the information I’ve gathered over the years concerns the clinical and surgical aspects of the sternal cleft repair. There is very little information ‘out there’ for lay readers about direct or side effects of the condition that may impact the children’s growth. However I make here a list of the information I have, either because I read it in an scientific article, was told by the doctors following my daughter’s case, by parents of children having a partial or total sternal cleft, and even by a young adult whose cleft was closed at the age of 2.

• isolated sternal clefts seems to be asymptomatic and many authors of scientific articles affirm that there is no impact a part from the aesthetics consequences of the chest difformity. One doctor even said to me that if I judged that my daughter could deal with her appearance, then there was no need to undertake the sternal cleft repair. I have written about this issue in Sternal cleft: repair or not repair? Mother’s questions to a scientist and in Asymptomatic sternal cleft: is the repair necessary only for aesthetical reasons?. However, Doctors Alexander A. Fokin and Francis Robicsek in: Management of chest wall deformities in Advanced therapy in thoracic surgery, in: Kenneth L. Franco, Joe Billy Putnam, Robert S. D. Higgins, J Sanchez, PMPH-USA, 2005, 548 pp. give 6 indicators for external cleft repair, amongst which a) Enlargement of the defect over time will worsen in appearance and make it more difficult to correct, and b) paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections.
• My daughter’s doctors and also three other families of children with isolated upper sternal cleft affirm that after the closure they can move their arms normally and can do any sports without problems.
• Again doctors, families and also one young female adult whose cleft was closed at the age of 2 said that the cicatrice is barely visible. Usually families do not share photos showing the result of the surgical repair. And I have found only one on the Internet.

Now, my personal experience is the following:

• My daughter’s cleft has not been repaired early because the doctors wanted to see if the sternum would grow alone and the cleft close naturally over the years. It has until a certain point: now a thin layer of the cartilage bone has grown covering a a good third of the cleft. Here you will find some recent photos. You will notice that she has a little wart on her skin where the cleft starts.
• She has never suffered from any respiratory issues when she has caught colds. Although it is a little impressive when she cries or cough. As I said before, Fokin and Robicsek point to: paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections. And in Upper sternal cleft associated with unusual symptoms, S. Sen reports a case of sternal cleft with unusual symptoms such as dysphagia, restricted lingual movements and a voice problem.
• The only thing I have noticed, and also another mother in her daughter too, is that my daugther’s neck seems shorter. I’ve read about this in an article, but cannot recall now what the article was.

Here also some recent references and a name of an expert with 27 years of experience in sternal clef repair: José Ribas Milanez de Campos, from the Thoracic Surgery Department, Sao Paulo University Medical School General Hospital, Sao Paulo, Brazil.

• Repair of congenital sternal cleft in infants and adolescents by José Ribas M. de Campos, Luiz T.B. Filomeno, Angelo Fernandez, Raul Lopes Ruiz, Hélio Minamoto, Eduardo de Campos Werebe, and Fabio B. Jatene published in The Annals of Thoracic Surgery.
• Twenty seven-year experience with sternal cleft repair by José-Ribas Milanez de Campos, João-Carlos Das-Neves-Pereira^_*, Manoel Carlos Prieto Velhote, Fábio Biscegli Jatene published in the European Journal of Cardio-Thoracic Surgery. This article was discussed publicly in the letters to the editor. See: Use of titanium plates in repair of adult complete sternal cleft by Khaled E. Al-Ebrahim and Reply to Al-Ebrahim by José Ribas M. de Campos and Joao-Carlos Das-Neves-Pereira.

The collection of educational tools for Second Life

March 2nd, 2010 • MUVEs • 6 comments

I’ve been interested, for several years already, in creating a documented collection of educational tools for Second Life.  The effort however to produce a snapshot in time of the variety of tools available for educators required a dedication beyond individual commitment. If the purpose was to create a valuable contribution for the community of educators at large, it was clearly a work for many, many helping hands and contributors.

The MUVEnation open online programme gave me the opportunity to organise such a work. First, back in September 2008, I coordinated the efforts of 33 partcipants in the introductory course for the identification of more than 100 tools used for teaching and learning in Second Life. Later, in March 2009, 55 education professionals (lecturers, researchers, learning technologists and teachers) have collected, tested and fully described more than 150 tools for teaching and learning in Second Life. The result of this collective work has been transformed into a book, published as an Open Educational Resource under CC licence by attribution unported, so anyone is free to distribute without restrictions: adapt, translate, re-mix and improve it.

The book is presently under a last quality control review for public release and it should be available by the end of March 2010. The book was edited by me in collaboration with Jaime Alamo, professor at the University of Valencia. The list of authors who contributed to the collection is here:

Read more »

Fente sternale: la peur de l’inconnu nous angoisse beaucoup

February 28th, 2010 • Fente sternale, Pourquoi ça n'arrive qu'à moi? • 4 comments

Ce post en guise de réponse à une maman d’un enfant atteint d’une fente sternale:

Mon fils a deux mois et est atteint de cette malformation. Nous avons vu un chirurgien de Necker qui programme l’intervention prochainement. Comment s’est déroulée l’intervention ? et l’hospitalisation ? Quelles ont été les suites ? Merci pour vos réponses, car la peur de l’inconnu nous angoisse beaucoup. (Voir son commentaire en contexte ici)

Moi, aussi je me suis posé ces questions et n’ai pas pu trouver de source faisant autorité en la matière, ni de témoignages de parents accessibles sur Internet. Alors, je me suis adressée directement à Necker et aussi contacté des parents qui avaient laissé des commentaires sur ce blog , ainsi que des parents d’enfants ayant été opérés à Necker.

La fente sternale de ma fille ne concerne que le tiers supérieur du sternum et elle est isolée; c’est-à-dire qu’elle n’est pas associée à d’autres malformations ou maladies. J’avais donc le choix de l’opération selon que je considérais que ma fille pouvait vivre ou plutôt bien vivre avec sa malformation de la poitrine car cette malformation ne nuirait pas son à développement. Nous devions nous décider très vite, car plus l’enfant grandit mois sa paroi thoracique est “malléable”.

Je devais donc décider d’une intervention chirurgicale pour des raisons esthétiques sur un corps qui n’est pas le mien, qui ne m’appartient pas et surtout, sur un corps qui est sain. J’ai écrit sur ces questions dans Sternal cleft: repair or not repair? Mother’s questions to a scientist. Et je vous livre ici le compte-rendu de mes recherches:

Les questions-réponses aux médecins

• Mon Pédiatre n’a pas trop d’avis sur la question car Il ne s’y connaît pas du tout. Mais il s’est porté volontaire pour m’aider à comprendre le jargon médical des articles scientifiques, et après lecture, m’a conseillé de l’opérer. Il ne peut cependant m’éclairer sur les questions relatives à l’interventions, ni aux phases pre et post opératoires.
• Le docteur Faiza Khan a pris le temps de me répondre de docteur à patient et aussi de maman à maman. Elle me conseille la réparation de la fente sternale, tout en essayant de comprendre les raison de mon angoisse face à l’inconnu.
• J’ai posé 10 questions par email à l’équipe de médecins qui suit mon enfant à Necker. Le secrétariat du service m’a transmis les réponses (ici en gras) aux questions suivantes:
  • Quelle est la méthode de réparation chirurgicale que vous utiliser pour refermer la fente sternale? La méthode consiste à rapprocher.
  • Existe-t-il des méthodes d’intervention, je pense à des implants, qui pourraient nous permettre d’opérer mon enfant plus tard lorsqu’elle pourra participer à la prise des décisions? Non
  • Existe-t-il des interventions qui laisseraient une cicatrice horizontale? Non
  • Quelle est la durée de la période de rétablissement, lorsque l’enfant doit rester à la maison? 45 jours
  • Est-ce douloureux et pendant combien de temps après l’opération? Lorsque mon enfant sera chez vous, elle sera prise en charge, mais après à la maison quels sont les soins que nous devons lui prodiguer? Les douleurs peuvent persister pendant 1 semaine. Il n’y a pas de soins particuliers à prévoir à la maison
  • Combien de temps, après l’opération, sera-t-il nécessaire pour récupérer un mouvement total des bras en arrière? Pourra-t-elle pratiquer n’importe quel sport par la suite? Il faut compter 2 mois pour la récupération. La reprise des sports sera possible par la suite.
  • Avez vous des photos des patients opérés dans vos services où l’on peut apprécier le résultat de l’intervention? oui, il existe des photos.
  • Qui va opérer mon enfant? Les opérateurs seront le Pr. Glorion et le Dr. Padovani.
  • Est-il possible de se mettre en contact avec les autres familles des enfants opérés par vous? Je pense aux deux cas de fente sternale dont vous m’avez parlé. Oui dans la mesure où eux sont d’accord.
  • Y-a-t-il un soutien psychologique dans votre service, à la disposition des familles et des enfants qui vont subir une intervention chirurgicale? Oui, nous avons une psychologue dans le service.

Les entretiens avec les parents

J’ai contacté plusieurs parents d’enfants dont la fente sternale a été réparée. Dans tous les cas, les enfants ont été opérés entre les deux et les dix-huit mois de vie. parler de la malformation de son enfant n’est pas facile, d’autant plus que certains parents, tout en reconnaissant l’utilité des information que je publie ici depuis bientôt 5 ans, avaient peur de trouver des informations appartenant à leur vie privée diffusées sur Internet. Aussi il m’a été impossible d’obtenir de photos d’enfants après intervention. Mais ces quelques conversations de parent à parent m’ont aidé à apaiser mes angoisses. Une maman très généreuse a passé plus d’une heure au téléphone avec moi. J’ai été aussi contactée par un adulte ayant été opéré enfant à deux ans.

• Il s’agit d’une opération longue.
• L’enfant ne souffre pas trop compte tenu du programme de gestion de la douleur postopératoire.
• Le rétablissement peut prendre de 10 à 15 jours à l’hôpital, ensuite l’enfant peut rentrer à la maison.
• Les soins prodigués à la maison sont tout à fait gérables par les parents, pour les soins les plus délicats on peut toujours aller en milieu hospitalier.
• La cicatrice s’estompe très rapidement et elle est à peine visible au bout de quelques années.
• L’enfant peut très rapidement recommencer une vie normale: tout faire, y compris le sport.

Dans deux cas, les fils non résorbables utilisés pour refermer la fente sternale ont cassé ou se sons détendus. Dès lors on considérerait l’utilisation des fils résorbables. J’ai aussi entendu dire que lorsque les fils non résorbables cassaient ils pouvaient ressortir légèrement créant des protubérances sous la peau. Mais franchement j’ai déjà du mal à imaginer le résultat de l’intervention, encore moins les complications.

La recherche d’informations scientifiques

J’ai continué ma recherche de sources scientifiques pour savoir s’il y avait d’autres raisons, mis à part les raisons esthétiques, justifiant la réparation des fentes sternales isolées ou asymptomatiques. Dans le post Asymptomatic sternal cleft: is the repair necessary only for aesthetical reasons?, je rends compte d’un article scientifique où l’on trouve 6 indicateurs pour la réparation des fentes sternales, au delà des raisons purement esthétiques. Deux indicateurs de la liste m’ont amenée à reconsidérer l’opération:

• “Enlargement of the defect over time will worsen in appearance and make it more difficult to correct”
• “paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections”.**

Mon enfant sera opérée le 7 avril 2010, si j’obtiens l’accord de la caisse d’assurance maladie belge.

** Alexander A. Fokin and Francis Robicsek, Management of chest wall deformities in Advanced therapy in thoracic surgery, Kenneth L. Franco, Joe Billy Putnam, Robert S. D. Higgins, J Sanchez, PMPH-USA, 2005, 548 pp. Alexander A. Fokin est également réferencé pour son classement d’indications pour la réparation des fentes sternales dans: Michael J. Sundine, Treatment of sternal clefts in Reconstructive Surgery of the Chest, Abdomen, and Pelvis, Gregory R. D. Evans, Informa Health Care, 2004, 473 pp.