INFORMATIVE NETWORK - EXPERIENCES
In this area, anyone can report all information, addresses and details useful to fix consultations, to
plan rehabilitation and a surgical intervention in Italy and abroad. After filling the form about personal data processing found clicking on "FORM TO JOIN THE GROUP", it is suitable to leave at the end of your message a telephone number or an e-mail address to allow all those who require further information to get in touch with you. The aim we fixed creating this space is to make contacts with hospitals and doctors easier thanks to the DIRECT EXPERIENCE of families
REPORT: THE MEETING HELD ON 2ND OCTOBER 2004 AT SAN PAOLO HOSPITAL IN SAVONA
On Saturday 2nd October 2004 at the Children Service at San Paolo Hospital in Savona, a meeting was held about:
"Major dysmorphoses – diagnosis – indications – timing – intervention types”;
“Goldenhar Syndrome – Franceschetti Syndrome".
The meeting organized by Prof. Amnon Cohen, head physician of the Children Service in collaboration with the “Italian Goldenhar Syndrome Group” and the “Cresc.I” onlus Association, enjoyed the presence of three important French doctors: Prof. Joseph Giordanetto, specialized in Dental-facial Orthopaedic, Prof. Jacques Mercier, head physician of Maxillo-facial Surgery Service at Nantes Hospital, and Prof. Françoise Firmin, worldwide known specialist in ala auris reconstruction, responsible of the Reconstructive Surgery Service at “Bizet” Clinic in Paris.
The day started at 8.00 in the morning when the specialists started visiting all patients present at the meeting: about 25 children, and not only, coming from the whole Italy. Visits lasted till about 16.00, and each of us could exhaustively have all necessary information about intervention techniques, timing and modes, specific for each case.
As parents, after meeting each other, we felt the need to speak more in detail about our group and about its future work, considering the growing number of cases and members. We therefore met in the congress room in "Vigiola" pavilion in the same hospital. And, waiting for the professors and their lectures, we could discuss and compare the results of the consultation concerning our children.
Carefully listening and understanding, we shared our emotions, expectations and delusions that each family is experiencing for the sake of the children. Once again the importance of not being alone emerged, as well as the possibility to share medical experiences in order to prevent mistakes due to the hurry to solve problems. We understood that it is important to evaluate correctly timing, modes and guarantees to have positive results. As many parents witnessed, we insisted on the importance of creating a serene family environment to let our children grow as harmoniously as possible.
Along with these considerations, we moved to the discussion about those technical and organizational aspects concerning our young group which also feels the need to protect its members legally. We unanimously decided for the birth of an Association legally recognized at Italian and European level, to preserve the members’ rights, in particular those concerning the covering of expenses for chirurgical interventions and rehabilitation processes held both in Italy and abroad (E112 form). To carry out this project each parent was asked a more extended and active collaboration to manage the contacts among parents and with the health centres (ASL and distretti sanitari) present in the Italian regions to make capillary the public opinion and the doctors more sensible about the existence of Goldenhar Syndrome and associated anomalies.
At the end of the visits, at about 16.00, the specialists illustrated during the lectures – clearly and plainly, with the help of visual examples – the techniques they adopt during the interventions, and timing. And they gave us all information useful to face such an experience.
Everyone was definitely satisfied because for the first time we could actually see all the passages of the process that is to be faced to solve our children’s problems. Eventually doc. Cohen opened question time to allow all participants to ask questions and to express doubts and perplexities connected to each single case. And even when this part of the meeting came to an end the participants’ satisfaction was clearly perceivable after such an important day; we all realised that those specialists sitting in front of us had all the experience and knowledge we required.
The day ended at 19.00, when we left and came back home, tired but hopeful for all we had just learnt. We still keep all the emotions we felt that day: tenderness for our children – all together for one day –, hope to give them the best, and gratitude for those who could organise such a rare and capital event!
REPORT: ON THE CONSULTATION ABOUT RECONSTRUCT THE AURICLE HELD IN PARIS ON 4/11/2003 WITH DOC. FRANÇOISE FIRMIN
This is Elena writing. I am the mother who lives in Verona and that some of you met during our first Goldenhar parents meeting held on 18-10-2003 at Baschirotto centre in Vicenza.
As I already mentioned in that occasion, I am sending you some useful information dealing with the operation to reconstruct the absent auricle. I collected this information during my staying in Paris with my 2 ½ years old daughter, when we were there to meet a renown surgeon who specifically operates in this delicate field.
For our staying, we addressed to an Italian nuns’ religious institute right in the centre of Paris (15 minutes on feet from the Eiffel Tower and 15 minutes by underground to the clinic where the doctor works). The careful cleanness of rooms and the simple Italian cuisine, allowed us to make ourselves at home, especially my daughter who was free to move and eat what she loved best!
This institute actually offers hospitality to Italian patients and their families; nuns are therefore very careful and lavishly help all their guests offering them a private taxi service to reach clinics, hospitals and airports. For those who wish to have further information on prices and more details, please contact me via e-mail ( mail@goldenhar.it).
As far as the consultation is concerned, the doctor explained us with a great deal of patience and professionality, the technical modalities to rebuild the absent auricle which will take place in two operations only at the age of 10. Such age actually allows a complete development of the ear dimension which will remain as such all life long (then it is worth waiting for it!), moreover the quantity of cartilage taken from a rib to shape the ear must be consistent, and only a suitable development can allow all this.
My husband and I introduced the needs of all children of the Group who - as well as ours - have the same needs. To simplify things, whenever you wish to fix a consultation, the doctor suggested us to contact her as follows: send via e-mail a recent photo of your child where its face is well visible, and the missing ear (the age of three is perfect), specify (better in French, but in English it is possible as well) the diagnose and the description of the problems they will have to operate on, for example: the eye, jaw, ear, back, and so on.
During our consultation the possibility of letting children be visited by a team of specialists on malformations connected to Goldenhar who co-operate among them and plan together reconstruction and operations on each case came out. Once the documents are sent, the doctor will write you back fixing with you a date for the visit in Paris and in that occasion, besides her, your child will meet even the other specialised doctors on that day to discuss about further exams and operations to do besides the reconstruction of the auricle.
We can provide even precise information about the costs of the two operations - that are to take place in Paris - and explain in detail how they will be technically performed.
You can write us via e-mail ( mail@goldenhar.it) and phone us, if you already have our telephone number.
CLINIQUE BIZET, 23, RUE G. BIZET, 75116 PARIS
TEL. ACCUEIL 0140693500 FAX 0140693624
STANDARD 0140693434 E-MAIL: francoisefirmin@damma.org
SECRETARIA 0140693510
L' ACCUEIL DEL FAMILLES d' HOSPITALISES a Paris le ROUSIER ROUGE
SEE YOU SOON ELENA AND PAOLO
REPORT: THE OPERATION HELD AT THE DEPARTMENT OF SURGERY AND ORTHOEPEDY AT “LA TIMONE” CHILDREN HOSPITAL IN MARSEILLE DIRECTED BY PROF. GÉRARD BOLLINI
We are the parents of Tommaso, a child born affected by Goldenhar Syndrome. Tommaso was born with an important malformation of the vertebral column; he actually has two hemispondyles at lumbar level which are now well compensated and a thoracic one causing a malformation, congenital, development scoliosis. The thoracic problem was treated surgically in April 2003 at the Centre in Marseille. To those who are addressed the Centre in Marseille was indicated for similar problems, here follow some useful information:
Hospital address
A.P.H.M. Assistance Publique Hôpitaux de Marseille
Hôpitaux de La Timone - Surgery and Orthopedy Department
Hôpital Timone Enfants
264, rue Saint-Pierre
13385 Marseille Cedex 05
Professor Gérard BOLLINI
Head physician - University Teacher
Secretary: tel. 04 91 38 69 05
tel. 04 91 38 66 97
fax. 04 91 49 28 31
Consultations (to fix a visit)
Tel. 04 91 38 66 55
Tel. 04 91 38 66 56
Visits take place on the 10th floor of Hôpital La Timone Enfants.
E-mail address and Internet site
Professeur Gérard BOLLINI: gerard.bollini@ap-hm.fr
http://www.timone.univ-mrs.fr/medecine/personnels/ENSEIGNANTS/C/BOLLINI_Gerard.html
Useful addresses:
Italian Consulate in Marseille
Rue Alger 56 - 13005 Marseille
Tel. 00 33 4 91 18 49 18
At disposal of those families who make request, the Consulate places an Italian person who lives in Marseille and is a volunteer at the Hospital.
To call from Italy dial:
00 33 - 4 + number
Where to sleep
ETAP HOTEL - Marseille Timone www.etaphotel.com
69 Boulevard Sakakini - 13005 Marseille
tel. 04 91 49 79 00
fax 04 91 49 79 15
This Hotel rises at about 300 m. from the Hospital
IBIS HOTEL - Marseille Timone www.ibishotel.com
107 Boulevard Sakakini - 13005 Marseille
tel. 04 91 49 09 15
fax 04 91 49 09 23
This Hotel rises at about 100 m. from the Hospital
In the Hospital Complex there is a structure which can host relatives (usually fathers since mothers are in the hospital with the child).
Rooms are comfortable, there is a kitchen and a meeting room; when one is hospitalised - and only in that case - thanks to the matron ask if there is a vacant room if you want to sleep there.
Rooms cannot be reserved, admission is possible only when a room is vacant. The price is cheap: about € 8.00 a day.
La Maison de Parent Mc Donald
Maison de Marseille - Hôpital de La Timone - Enfants
23 Boulevard Jean Mounin - 13005 Marseille
Tel. 04 91 32 33 10
How to get there
By car from Ventimiglia follow E80; before reaching Aix-en-Provence follow Aubagne directions. When you get to Marseille choose “2b Timone” exit, drive on and keep the right; after about 1 km on your right you will see the Hospital Complex.
You can contact us via e-mail ( mail@goldenhar.it) or phone us if you already have our telephone number.
SEE YOU SOON, GIUSEPPE AND DONATELLA