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

April 8th, 2010 • Fente sternale, Pourquoi ça n'arrive qu'à moi?
Tags: Body, Corps, Fente Sternale, Open Access to Scientific Information, Sternal Cleft

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.

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

February 28th, 2010 • 4 comments Fente sternale, Pourquoi ça n'arrive qu'à moi?
Tags: Body, Corps, Fente Sternale, Open Access to Scientific Information, Sternal Cleft

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.

Images of superior sternal cleft in a 4 years old

September 16th, 2009 • Fente sternale, Pourquoi ça n'arrive qu'à moi?
Tags: Body, Corps, Fente Sternale, Sternal Cleft

Here two images from a recent thorax scan of my daughter before surgical intervention.

Asymptomatic sternal cleft: is the repair necessary only for aesthetical reasons?

May 5th, 2009 • 1 comment Fente sternale, Pourquoi ça n'arrive qu'à moi?
Tags: Body, Corps, Fente Sternale, Open Access to Scientific Information, Sternal Cleft

Contrary to what I’ve been told so far, that in the case of asymptomatic sternal clefts, a surgical intervention was recommended only for aesthetical reasons, I’ve found two articles on sternal cleft surgery stating that sternal clefts should be corrected and giving a series of indications beyond aesthetics.

These articles also outline the importance of addressing base by case, as sternal clefts, with r without ectopia cordis, represent a rare clinical entity:

and also, more detailed:

When I read this, two indications worry me “Enlargement of the defect over time will worsen in appearance and make it more difficult to correct” and also “paradoxic respiratory movements of the chest induce dyspnea and presispose patients to recurrent respiratory infections”.

I wonder then, why the doctors affirmed that leaving unrepaired Priel’s sternal cleft would not have any consequence in her future development.

Dr Alexander Fokin is the author of the first fragment cited here that comes from 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. He is also cited as main reference for his classification of indications for sternal cleft repair in: 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.

Access to scientific information and support about sternal cleft: comparison of three sources

May 3rd, 2009 • Fente sternale, Pourquoi ça n'arrive qu'à moi?
Tags: Body, Corps, Fente Sternale, Open Access to Scientific Information, Sternal Cleft

As explained in Sternal cleft: repair or not repair? Mother’s questions to a scientist, I’m presently looking for scientific information and support to make an informed decision about the surgical intervention for aesthetical reasons of my 3 years old, Priel.

I’ve launched in parallel 4  methods for doing so:

• I’ve written, as I did almost 4 years ago, a post in English with a list of questions and a invitation for testimonies of parents and patients about their experience of (upper) sternal cleft. I have also, after reflection, posted two public photos of Priel. The majority of photos found online of upper sternal cleft come from medical archives and are not pleasant to see. In Priel’s case the cleft is very mild, it does look strange and every person who meet her remark either the gap on her chest or the way the air fills this gap when she breathes, but specially when she laughs or worse, cries.
• I’ve twittered about it, 3 persons retwitted  and I received an concrete answer offering help from a doctor in Oregon:

• I’ve reposted my blog post in TwitterMoms: http://www.twittermoms.com/forum/topics/sternal-cleft-repair-or-not
• I’ve used the traditional search for information method via the Directory of Open Access Journals and the Custom Google Search in the Open Science Directory. The first, gave me 4 links to medical articles. The second, more than 100 links to medical articles, the majority of them in closed databases. Each single article will cost $25-$40.  Cannot agree more with Open access and the price of knowledge. I still have to review these articles and cross fingers to find a literature review of upper or superior sternal cleft in a Open Access Journal. Dreams costs nothing!

These efforts will be completed by a post in French with questions addressed to the persons who contacted me during the last 3 years: two parents of toddlers with sternal cleft and a young woman whose sternal cleft was repaired in 1987. Let’s see which methods give the best results: self-search vs personal network?

Update 5 Mai 2009:

• No answer to my post in ‘the influential moms network’ Twitter Moms.
• Two persons retwitted: @NergizK and @Cristinacost, women and not of the egotwistical kind
• One doctor contacted me via Twitter and asked me for complementary information in a direct message
• I’ve surfed all the sources that came up using the Custom Google Search in the Open Science Directory: none is free access. However I found two excellent books of chest wall repair which text is partially accessible via Google Books.
• I’ve found two articles in free access via the Directory of Open Access Journals. I still have to read them.
• After preliminary readings on the subject, I contacted by mail Dr Alexander Fokin, who seems to be a worldwide expert in sternal cleft deformities and their repair, with my previous list of questions.

Sternal cleft: repair or not repair? Mother’s questions to a scientist

May 3rd, 2009 • 9 comments Fente sternale, Pourquoi ça n'arrive qu'à moi?
Tags: Body, Corps, Fente Sternale, Open Access to Scientific Information, Sternal Cleft

4 years ago, few hours after her birth, I discovered that my daughter had a sternal cleft of the upper third of the sternum*. I’ve collected all possible sources accessible to the general public and prepared an information sheet for parents like me, asking for questions not answered by their doctors: Quand une maladie rare frappe à notre porte .

At the time, the references in the articles put me on the trail of Professor Padovani, now retired surgeon of the Hopital des Enfants Malades, Necker in Paris, see Sternal cleft: Case report and review of a series of nine patients. I’ve seen him once in 2005, for 10 minutes, along with Professor Glorion who is the chief of the orthopaedic surgery and paediatric traumatology unit. It was like seeing the president – very short and straight to the point – no time to waste here.

I’ve been there three times:

• October 2005: Sternum may grow during the first years of life. Let’s see her sternum development in one year.
• November 2006: Sternum is growing slowly. Let’s see her sternum development in two years.
• May 2009: her sternal cleft is still visible, but is not one unpleasant to see. Could be worse, couldn’t it? The choices are between letting her grow up adult with a gap in her upper chest, a gap that fills with air like a frog or a bird, when she cries or laughs. Or going for a sternal cleft repair, by approximating the U-shaped sternal defect, that leaves a vertical scar. It needs to be done soon, this autumn, while her bony thorax is still compliant.

Today I feel as if everything were starting again. Alone with no answers, not knowing what decision to take. With no time to ask all the questions I wanted. Feeling like disturbing the big scientist who gave me enough time already. Many other children are waiting in the corridor to see the Professor. I have to leave.

Today I’m upset. I don’t have elements to make an informed choice. From what I understood, approximating the U-shaped sternal defect is something like opening the chest vertically, sewing bones together, and closing the chest. But nothing of this was explained properly to me. I guess because a lack of time or because I’m parent, not a doctor. This is not parents’ business. Doctors decide what to do and we, patients, have the freedom of accepting or not. But no one sits near to you and explains the state of the art in the field, reviews the variety, if any, of surgical methods for sternal cleft repair, and gives advice.

The uncomfortable position I find myself in is one of deciding a surgical intervention for aesthetic reasons on my daughter. After all, is her body, not mine. Why do I have to decide how she will prefer to live? Would she prefer to live with the defect or with a persistent scar? Will she always hide her neck, wearing longs necks and collars? How will she feel, with her naked body, when making love for the first time? These are not doctor’s matters.

If you as a scientist, drop by this post, please help the mother and explain me:

• What are the different methods for sternal cleft repair?
• Are there alternative methods that do not leave a vertical scar across neck and chest, but a horizontal scar?
• Is there any method of intervention at a later age that will allow her to participate in the decision making process?
• If this is the only method to repair, when her bones are sewn together, will the thoracic cage have the same amplitude?
• Does it hurt and how long after the intervention patients suffer?
• How long it takes to fully recover and not to be in pain?
• Will she be able to move her shoulders back fully? Will she be able to play sports?
• Are there photos that I can see of the results an intervention like this?
• Are there any testimonies of other patients on the quality of life with a sternal cleft and with a repaired sternal cleft?

*Sternal cleft is a rare congenital anomaly resulting from a fusion failure of the sternum

In the following photo from the case report Primary repair of a sternal cleft in an infant with autogenous tissues , by Sinasi Yavuzera and Murat Kara, we can appreciate a young girl before and after the intervention:

Flickr: I’ve unpublished 190 photos of my children today!

January 12th, 2009 • Pourquoi ça n'arrive qu'à moi?, Technologies sociales
Tags: Abuse, Children, Flickr, Photos, Safety

Today is the last day a pic of my children is made favorite by a perv. There are plenty of photos of them in my collection. But from now on, they are public only to my friends and family.

You may also want to check The Privacy of Our Kids in Flickr, an art project using children imagines deliberately published by parents under CC by, SA, NC.

I’m also a STARR: Tell me whom you walk with and I’ll tell you who you are

December 29th, 2008 • 7 comments Moi Numérique, Moi-Je par soi-même, Pourquoi ça n'arrive qu'à moi?, Technologies sociales
Tags: Allaitement, Autoportraits, Breastfeeding, Digital self, Femmes, Flickr, Moi Numérique, Moi-Je, Nu, rhiz08, Social Network Services, Social Software

In the field of the Eduserv workshop on digital identities, the 8th January 2009 at the British Library, Steven Warburton and Yishay Mor invited us to share small stories in which we are the main character (or at least a first-hand witness), and which we believe illuminates an interesting aspect, or dilemma, of digital identity.

A few have been collected already : about disaggregated identities, about the pressure of existing within a Twitter community, about students hands-in-hands friends in FB with teachers, about the impact of an online identity in online job search, and also about the exposure of a teenager photo by a counsellor without a full understanding of of CC licences. Yishay also prepared a short presentation that provides guidance to the task with the STARR template.

Dime con quien andas y te diré quien eres!

And because, I’m also a STARR, here is my story: Dime con quien andas y te diré quien eres! This is a Spanish saying my mother repeated me to death when I was a teenager. Literally translated into English, it will be: Tell me whom you walk with and I’ll tell you who you are. But the saying translated into another form would be:

• Hunt with cats and you catch only rats
• Birds of a feather flock together
• A man is known by the company he keeps

S/Situation

I have a Flickr account, since 2004. I have always used for both personal and professional aspects of my real persona. I also have a Flickr account for my avatar, Paz Lorenz, since 2006. I use sets and collections to separate personal and professional content. But also to separate different parts of my personal life. I don’t want my self-portraits mixed with my kids. In this first account, I haven’t really engaged in rich conversations with other Flickr users. I didn’t feel the need to complete my profile, I have only 33 contacts, most of them real life friends and belong to a few groups, mainly related with spontaneous and brutal art. Opposite to Paz who maintains a richer social life and spends her time flickering.

My accounts are frequently aggregated by other users who make me their contact. Some of my photos are added as a favorite, and commented. As a consequence, a part of me is automatically added to other people’s profiles and photostreams: I appear in the list of contacts of a given user. My photos appear in the users’ favorite collection, associated, out of context, with other photos, according to a criteria I don’t necessarily perceive or understand.

T/Task

My problems started with a photo that my older son, Sariel, took of me, while breastfeeding my newborn Forest. In one year, ‘Happy breastfeeding’ was seen 3,464 times. My photo started as a project against people who complain because of breastfeeding in public places, after two awful encounters where I’ve been told to ‘stop doing that there”, even though it was discrete and I had a scarf over the head of my one month old baby.

As an answer, I wanted to replicate a photo of another Flickr user that unfortunately isn’t public whose title is ‘For you pervs out there. . .’ In this photo a mother of a toddler is breastfeeding her child, while she gives ‘fuck you’ sign straight to the camera. The photo, as many other of the kind, is published in the Go fuck yourself Flickr group. So I wanted to do the same: nurse not so discreetly while looking straight into the eye of those people who condemn breastfeeding in public and be rude and angry. But this was impossible with my little clown taking the photo. We couldn’t be serious and didn’t help but laughing out loud. And the result was this:

Since, the photo has been marked as a favorite by many ‘pervs’ who maintain fake Flickr accounts where they do not post any photo, but where they collect other users photos showing nudity, partial nudity like mothers breastfeeding showing part of her breasts or children without Tshirts playing in the nature by a hot summer. Suddenly my photo and I appeared associated to pornography, among the contacts and in the collection of users who are also member of ‘Mature women nudes’ and ‘Delicious oral sex’, just to cite the less offensive groups.

A/Action

When I realised that this was happening, I defined a personal rule regarding my content in Flickr: to block any contact or fan of my photos who is associated with pornography: publishes porn photos, belongs to porn groups, has porn favorites or invites one of my photos to a porn pool.

R/Results

I systematically monitor accounts of people who establish any virtual relationships with me in Flickr, and if not compliant, I block.

As a consequence, and to remain those who do not know how blocking functions in Flickr, these users:

• Can’t comment on my photos (All comments on my photos made by them are deleted)
• Can’t comment on my sets (All comments on my sets made by them are deleted)
• I am removed as theirs (They can’t add me as a contact again)
• Can’t add my photos as favorites anymore (Any of my photos marked as their favorites are removed)
• Can’t blog my photos
• Can’t add notes or tags
• Can’t send me FlickrMail

This obliges me to follow up my social activity closely, as I don’t want to be associated or to have my 4 kids associated with these people. Naturally, I could have set my collection to private contacts or friends-only. But I don’t want this. I want a public collection of photos. And ‘Happy breastfeeding’ is my provocative public statement on breastfeeding.

Not directly related, I also don’t tag my children’s pics, so they are not overexposed. And the titles in general are name+date. I changed most of them to be only accessible by contacts and left only the portraits for the public eye.

R/Reflections

The main realisation was that there is a time consumption issue associated with the management of private-public content on the Internet. Most of the mothers who put their children photo on Flickr are subject to this kind of problem, and yet one faces a dilemma between restricting photos to friends only or deploying strong policies for control of interaction around one’s images. Hence users develop their own strategy to control these issues, like:

• using FlickrMails in a chain between mothers to investigate the good intentions of a certain Flickr user. Followed by massive blocking and reporting abuse.

• using one’s profile to explain what type of interaction policy is suitable for one’s account. Like another of my contacts who states in her profile:

“my pics tells about love and sharing, proximity between parents and child, nothing sexual in it i precise!!! i DO NOT wish my pics to be added as favs on people’s account who are looking for erotic or porn aspect , neither be added as contact i am therefore very happy to share my pics with people respectful to that opinion, motherhood is pure… thanx!”

I became more aware of certain threats that have an impact on my digital reputation. The ENISA Position Paper No.1 Security Issues and Recommendations for Online Social Networks was an enlightning read that increased my understanding and awareness of these issues.

A teaching nightmare

June 16th, 2008 • 7 comments MUVEs, Pourquoi ça n'arrive qu'à moi?
Tags: Apprentissage, MUVEs

Ce post, le premier en anglais dans mon blog, a été écrit pour le blog du projet MUVEnation: “Active learning with Multi-Users Virtual Environments to increase pupils’ motivation and participation in education”.

So yesterday we have started the MUVEnation monthly series of “events”. We have agreed on this one month ago, moved by the idea of improving our project’s members SL competences and also creating opportunities for cooperation and group bonding. Most of us work closely together in real settings, but have few opportunities to spend time inworld.

An event can be everything: from a teaching experience, to a guided tour; from scuba dive party to a virtual barcamp.

From May 2008 and all throughout 2008, the partners of the project will organise an inworld activity for his/her fellows: 8 partners, 1 partner, 1 activity per month.

Someone has to start: that was me! This blogpost is the story of the first event that turned out to be a teaching nightmare!

One month ago, I planned to organise a ‘hand’s on workshop’ as a discovery of prim-hair making in second life: 1750-1795 in fashion: “Make wigs, make wigs, make wigs”. I decided to organise a hand’s-on workshop because i have been analysing the genre for 1 year, collecting cases and analysing good practices; although i have never given one as a teacher. But thought naively that my experience as a mentor and the results of my observations would be enough. Wrong!

It took me 20 hours to design and organise my 1 hour workshop. One full day for searching inspiration, selecting the theme, collecting resources, training myself to the task, designing the activity, preparing the description in the wiki and sending out invitations. Another 12 hours to prepare the teaching space, build the learning resources, search for inworld tools for delivering the instruction, chatting with Corwin Carillon (aka Nick Noakes), and testing the activity with Steven for final adjustments and ‘validation’.

Why I prepared a building workshop on making wigs? Because…

• I adore wigs. In my inventory I have at least 50 black, red and white wigs,
• I wanted to learn how to make prim-hair and I saw the workshop as a learning opportunity for myself,
• I wanted to test how well went a format insisting in only a few set of skills (making Torii, duplicating, basic texturising, linking) but giving freedom to students to play with size and position: freely shrinking and intensively aligning to death! i.e. giving them the opportunity to taste what building is, and not providing them with detailed instructions about size and rotation.

And the workshop started. And I was already trembling with excitation and stress. I needed one day more of work! And I am not a English native speaker. And I was with my new computer with an AZERTY keyboard mixing ‘a’ and ‘q’…

What happened?

• 6 people turned out and two could not join the location.
• Waiting for people and solving membership problems took us 15 minutes, so we started late,
• The space of the workshop, a square with avatars at 10 meters of distance from me in the centre, was too wide so they could hear me but avatars in the extremes could not use the main chat channel because they were at more than 20 meters of distance.
• We decided to use the group channel, but soon my messages were not getting in so I returned to the main channel and was dealing with Q&A either in the main channel or via.
• I experienced some problems relating to the workshop’s supplies: the pose stands in the area were locked so participants could not change the position to be more comfortable (I changed this after but again lose of time) and also the hair textures were no copy, so they did not came into the supplies folder.
• Although I have prepared images about each step that I delivered through a link to my Flickr account, participants were already too busy to open an extra window and consult them (as some of them told me). I have also made several wigs illustrating each state and asked them to wear, but they lacked of a visual and constant reference of the task.
• I had at least 3 different SL skills level from intermediate to very beginners, and the very beginners haven’t prepared the pre-required to the workshop and I haven’t prepare a back-up solution for this. With people struggling to rotate a torus and shrink and rotate within a limited space and in relation to their head, making a prim-hair workshop was a complete non-sense.
• I thought that giving room for freedom was an excellent idea, but participants turned out to be disrupted by instructions such as : “put the torus over your head, half inside, and modify it (CTRL+SHIFT) to follow the curve of your skull” (See: Follow the curve of your skull). Some kept me asking about the right dimensions for X, Y, Z, others kept the initial dimensions I have given, very few were comfortable with free modification.
• Participants did not stop asking questions, some repetitive, the same questions of their peers and i kept answering also in the main channel. I think this was very disruptive for all. Also it was for me impossible to manage different rhythms and some skilled avatars were stopped while waiting for the others. I did not have any back-up solution for this neither.
• Only two avatars out of six finished the task in 1 hour time (not counting the lose of time of the beginning), two left before finishing the task at 1:30 pressed by IRL commitments: i guess filled up with frustration because for one the rhythm was to slow, and the other had some problems visualizing the task and with rotation and positioning), two could not finish the task at 2:30 as they were newbies and had real difficulties with building and positioning. One reported me that her position in the grid was terrible to align objects on hear head, but it was too late to change position and accept the lose of the relative position of the wig, not already linked.
• It took me one hour to understand why to avatars could not link their wig: I discovered that instead of aligning the red nose to their body (See: Red nose), they have attached to their head.
• My English abandoned me several times: iIwas struggling to find the translation of “Glissez la souris autour de votre tête en sélectionant tous les objets”, “Aux extrémités du carré” or “Chignon!!!”.
• At the end, filled up with frustration as well, I finish the session with my neck, arm and little finger aching and I am not going to search for the translation for: “j’avais des fourmis plein les doigts”

Why on earth I did not listen to my inner teacher?

If I were in a F2F setting, i would have never carry on with the activity: I would have stopped, said to participants let’s change and tackle the basics. Or i would have split the session into two groups: guiding newbies step by step, provided intermediate participants with a self-paced tutorial and just giving feedback on demand.

I cannot turn back the clock, but i can tell what I will do the next time:

• Design a teaching space with pose stands free to modify ans ask participants to to work on a position they find comfortable. Instead of putting them all around a square putting them in a line or in several chess lines in front on the teacher. They will be all spread in a 20 meters diameter so they can listen to each other. And also this will facilitate my task on following them with the camera.
• Set policies for using the main communication channel and also for Q&A.
• Prepare a practical exercise to do before the workshop as an assessment of required skills. If the participants cannot go thought the task, then they cannot participate in the workshop: better to review the basics first.
• Prepare a mini task introductory to the main task, so participants understand the process that we will carry on. For example, building 3 boxes aligned vertically by duplication, texturising them, linking them making the middle as root, attaching to skull, rotating to horizontal, editing linked parts, taking back to inventory and wearing.
• Displaying big images of each step in front of the participants. So they can see them easily while they are working.
• Test the workshop long time before delivering, so as to have enough time to implement instructional changes.
• Prepare a back-up solution for fast learners so they can advance comfortably at their rhythm.
• Prepare the basic instructions in a chat giver so I can spend more time helping via IM and looking at participants’ wigs.
• Review my English vocabulary and namely the hair fashion one!
• And finally investigate more about posing stands and alignment issues when creating a wig. Interview an experienced hair builder?

By the way, I will implement these changes and offer the workshop as an SL educational events open to all. Never end with a frustration, always go ahead!

I would love that participants in the workshop put their comments here, so we can have a multi-voiced picture of the workshop

Quand une maladie rare frappe à notre porte

August 13th, 2005 • 22 comments Fente sternale, Pourquoi ça n'arrive qu'à moi?
Tags: Body, Corps, Fente Sternale, Open Access to Scientific Information, Sternal Cleft

Inès Azahara, ma fille aînée, tient dans ses bras Priel Amaranta, notre 3e enfant née le 13 août 2005 à 15h28. Priel, dont l’étymologie hébraïque signifie “Fruit de D’ieu”, est atteinte d’une malformation congénitale rare du sternum qui touche au plus 1 enfant sur 30.000 dans le monde. Un espace vide à la place de la partie supérieure du sternum en témoigne. Dans ce vide, un petite poche se gongle et se dégonfle au rythme de sa respiration. Sur son carnet de santé, un diagnostic clair Aplasie sternale 1/3 supérieur sans anomalie fonctionnelle.

Dans nos têtes, c’est le doute. 2 jours de recherche nous apprendrons néanmoins :

• qu’au lieu d‘aplasie, d‘agénésie sternale, d‘absence partielle du sternum ou encore d‘absence du manubrium, on parlera davantage de fente sternale (fr), sternal cleft (en) ou hendidura esternal (es) ;
• qu’il s’agit s’une malformation très peu fréquente (0,15%) dans le spectre des malformations du sternum, dont les plus répandues sont le thorax en entonnoir (pectus excavatum) et le thorax en carène ou en bréchet (pectus carinatum) ;
• que la fente sternale peut être partielle (affectant la partie supérieure, médiane ou inférieure du sternum) ou totale, dans ce cas on parlera d’absence totale du sternum ;
• que la fente sternale peut être asymptomatique et isolée ou au contraire associée à des maladies congénitales rares telles que les anomalies de la ligne médiane comme la dysplasie vasculaire, caractérisée -entre autres- par l’apparition d’hémangiomes ou d’autres anomalies cardiovasculaires ;
• qu’il est nécessaire -et les experts s’accordent sur ce point- de procéder à une réparation chirurgicale de préférence au cours de la période néonatale :

The cardiopulmonary system progressively accommodates to the size of the thorax following the first 3 months of age, and the chest wall becomes firm. Thus, numerous authors agree that the optimal choice of treatment is the primary direct closure in the neonatal period with autogenous tissues, when flexibility of the chest wall is maximal and compression of underlying structures is minimal. Nevertheless, hypoplastic nature of the sternal remnants and the width of the cleft may sometimes preclude primary repair. Hence, more complicated procedures such as implantation of autologous grafts such as costal cartilages, parietal skull, tibial periosteum, and the use of prosthetic materials such as stainless steel mesh, Marlex, acrylic, silicone elastomer or Teflon have been suggested as alternative approaches. Although surgical repair should be performed in the neonatal period in patients with sternal cleft, a safe and favorable operation may also be performed with the use of autogenous tissues even in late infancy. Sinasi Yavuzer, Primary repair of a sternal cleft in an infant with autogenous tissues.

• que le bilan préopératoire comprend : une écographie du coeur, une radiographie et une tomodensitométrie ;
• qu’il existe très peu de cas de fente sternale reportés dans la littérature depuis 1740 (une centaine tout au plus) : le plus grand nombre des références étant cité dans la bibliographie de : Sternum, dans Illustrated encyclopedia of Human Anatomic Variation de Virtual Hospital ;
• que la plupart de références, notamment celles qui abordent la question de la réparation chirurgicale de la fente sternale peuvent être achetées en ligne moyennant 25/30$ l’article :
  • Repair of congenital sternal cleft in infants and adolescents par José Ribas M. de Campos de la Thoracic Division, Hospital das Clínicas, University of São Paulo Medical Center, São Paulo, Brazil ;
  • Bifid sternum: neonatal surgical treatment par Marcello Dòmini du Department of Pediatric Surgery, Policlinico Sant’ Orsola, University of Bologna, Bologna, Italy ;
  • Sternal cleft: A surgical opportunity par Eduardo Acastello du Department of Thoracic Surgery, Hospital de Ninos Ricardo Gutierrez, Buenos Aires, Argentina ;
• que l’on trouve également certaines références en libre accès :
  • Fissure sternale congénitale totale: à propos d’un cas par M. Chellaoui de l’Hôpital d’Enfants-Maternité de Rabat ;
  • Hendidura esternal total en un recién nacido y parcial en una niña de 4 años : 2 clinical cases par Patricio Varela B. du Servicio de Cirugía Infantil Hospital Luis Calvo Mackena, Departamento de Pediatría y Cirugía Infantil. Área Oriente. Universidad de Chile, Chile ;
  • Primary repair of a sternal cleft in an infant with autogenous tissues par Sinasi Yavuzer du Department of Thoracic Surgery, Ankara University School of Medicine, Ibn-i Sina Hospital, Sihhiye, Ankara, Turkey;
• que suivants les conseils d’Orpha.net – le serveur sur les maladies rares et les médicaments orphelins- on doit s’orienter vers des services spécialisés en Dysmorphologie ; mais on peut également s’orienter vers des services de Traumatologie et orthopédie pédiatriques ;
• qu’il y a une équipe de spécialistes, dont le docteur Jean Paul Padovani co-auteur de Le devenir à long terme du thorax en entonnoir opéré chez l’enfant et de Sternal cleft: Case report and review of a series of nine patients, qui traite les malformations du sternum depuis plus de 30 ans à l’hôpital Necker des enfants malades à Paris, au service Traumatologie et orthopédie pédiatriques dirigé aujourd’hui par le Pr Christophe Glorion.

Avec ce post, à l’attention de tout parent qui comme nous cherche des pistes de réponses face à la maladie de son enfant, nous arrêtons nos recherches sur la fente sternale et les maladies rares pouvant être associées et attendons patiemment notre premier rendez-vous avec le Pr Glorion et le Dr Padovani début septembre.