CDH UK welcomes all families to it's annual Family Get Together in Chesterfield, Derbyshire hosted by the Hills Family. This is the first Get Together of 2013, with others being announced shortly. Our Family Get Together's are an opportunity for families affected by CDH to come together for a chat and a coffee to share experiences and to offer support to each other. We also have a workshop session during the afternoon whereby we discuss a topic relating to CDH.

This is an informal and relaxed day and there will be activities and a play area for children. Light refreshments will be provided and awareness items will be available to purchase on the day. There will also be information available about fundraising for CDH UK.

We would love to see you this year at one of our Get Together's! To register please email .(JavaScript must be enabled to view this email address)

CDH UK AGM 2013

Sunday 28th April 1pm

Leicester Forest East Services

Leicestershire LE3 3GB

CDH UK would like to welcome all our service users and any other interested parties to join us for the AGM on Sunday April 28th 2013 at 1pm. Any questions you might like to ask must be submitted by post 2 weeks in advance by submitting them to .(JavaScript must be enabled to view this email address)

If you have any special requirements and would like to attend then please get in touch with us directly and we will be happy to assist

One of our families is to appear on Episode 13 of the hit TV show 'One Born Every Minute' to raise awareness of CDH to around 2.5 million viewers. Hayley, who is a member of our Family & Supporter's Panel (FASP) and her partner Pete allowed remote cameras to film their birth experience at the Leeds General Infirmary in August 2012 not knowing at the time what the outcome would be. Sadly Kaiden died, but the couple decided to allow their story to go ahead and be included in Series 4 to highlight the condition and to raise awareness on a national level. This will be aired on wednesday 27th March 2013 on Channel 4 at 9pm. You can find out more about the episode and the programme by clicking on the link below:

http://lifebegins.channel4.com/

For information and support on CDH please email .(JavaScript must be enabled to view this email address)

DUE TO ADVERSE WEATHER WARNINGS OF SNOW AND ICE FOR THE LEICESTER AREA THE COMMITTEE HAS POSTPONED THE MEETING AND WILL ISSUE A NEW DATE ASAP.

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Our Winter 2012 newsletter is now available for download here

Wishing you all a Merry Christmas and Happy New Year!

The production of our Winter newsletter is well under way and we are looking for stories and features from our families and supporters. Maybe you would like to share your CDH pregnancy & birth experience, or tell us how your fundraiser was organised and how it went on the day. If you have a CDH survivor maybe you would like to share how you have coped with any ongoing issues or share any milestones that they have reached. If you sadly lost your baby or child, how are you doing after your loss and how has re-building your life been......how do you remember your little one? You could tell us how CDH UK has helped you?

Whatever your story, each one will inspire others, so send it in to .(JavaScript must be enabled to view this email address)

Jan Deprest is a Professor of Obstetrics and Gynaecology at the University Hospitals Leuven, in Belgium. He trained in fetal medicine in Leuven, Leiden (Holland) and London (U.K.). He established the Eurofoetus consortium, which is dedicated to the development of instruments and techniques for minimally invasive fetal and placental surgery. That group earlier demonstrated that laser surgery in identical twins with “twin-to-twin transfusion syndrome” yields the best outcome. The Leuven Fetal Medicine Team dedicated part of their research to the study of antenatal treatment of congenital diaphragmatic hernia, eventually developing a percutaneous method for fetoscopic placement of a balloon into the fetal trachea (“FETO”). A European task force with the University of Barcelona (Hospital Clinic) and London (King’s College Hospital) was set up and by 2009 that consortium could report on over 200 such procedures. Also clinical studies were performed to define the survival chances of fetuses with isolated CDH using prenatal imaging methods such as ultrasound and MRI. FETO proved to be safe to the mother and fetus, and the initial data suggest it may improve survival and morbidity. In order to test the hypothesis that FETO is unequivocally leading to improved survival rates and/or may lessen morbidity in survivors, they have set up the TOTAL (Tracheal Occlusion To Accelerate Lung growth)-trial. Prof Deprest is currently the academic chair of his Department and active in the wider field of fetal lung development. He has published over 230 scientific papers.

We are extremely pleased and proud to present to you the very 1st edit of our CDH Awareness Film. We are aware of a couple of errors and it is not the finished article. This film has taken an awful lot of time, effort and thought and we would like to show it to you all before it goes to final edit, so that we can have your feedback. The film lasts approx. 13 minutes and will be our Charity's main awareness film. There will be another film released at a later date focusing more on the medical overview of CDH. Thank you so much to everyone involved in the making of this film. The song accompanying the photo montage at the end was written and performed by A CDH Auntie especially for you all and is called 'My Child'.......We hope you enjoy this 1st edit as much as we did....We dedicate this film to ALL families, babies, children & adults affected by CDH ♥

http://youtu.be/qdGJmg3d7Jc

On National CDH Awareness Day at 12 noon, we ask you all to give a few moments to remember and honour all babies, children and adults including their families that have been affected by CDH.

Thank You ♥

https://www.facebook.com/events/256582344447856/

Now available for online download. Download your copy here.