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ERNICA website goes live!

The European Network for Rare and Inherited Congenital Abnormalities (ERNICA) website has now gone live and we would like your feedback on it to ensure that it can continue to develop and improve for patients as well as Medics. You can read all about ERNICA and find out about CDH UK's involvement as a founding  patient organisation and ePAG on the patient involvement page. You can email .(JavaScript must be enabled to view this email address) with your suggestions or comments on the website itself.

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Date: 06 Aug 2018 - 02:33 PM

Congenital Diaphragmatic Hernia International Symposium Meeting

CDH UK is proud to be a sponsor for the upcoming CDH International Meeting for Medical professionals and associated organisations on the 14th and 15th of November 2017 at Alder Hey Children's Hospital, Liverpool. We particularly welcome patient Support Groups to this meeting. Full details as follows:

1st Announcement

 

Congenital Diaphragmatic Hernia

International SYMPOSIUM Meeting  - Liverpool  2017

 

November 14th – NOVEMBER 15TH 2017

 

Dear Colleagues and Friends ,

 

It is a privilege to announce and warmly invite you to join us in Liverpool for the 2017 International Congenital Diaphragmatic Hernia Workshop Meeting. 

 

The CDH meeting is being held as part of an event programme linking closely also with the Peter Paul Rickham Symposium which celebrates the life-time achievements of an eminent paediatric surgeon who was co-founder of the World’s 1st Neonatal Surgical Unit at Alder Hey Children’s Hospital in 1953.  A faculty of leading experts will deliver state-of-the-art lectures pertinent to clinical care and management of CDH ( prenatal /  postnatal / long term follow up ) including  the latest advances in the basic sciences / developmental lung biology of particular relevance to the clinician / investigator(s).   We invite Abstract submission(s) as free paper scientific sessions are a key feature included in the 2 day symposium timetable.

 

CDH Parent support groups are particularly invited to attend and contribute . We are delighted to announce that CDH UK will be joining us for the 1st International CDH Symposium to be held in the UK. 

 

Professor Paul Losty

On behalf of the local organising committee

 

Instructions

 

Abstracts are welcome on every aspect of CDH which will be scored , evaluated and selected by the scientific committee. Free paper sessions / posters presentations will be timetabled in the meeting programme scheduled with faculty lectures.  

 

On behalf of the local organising committee, CDH UK and the CDH EURO CONSORTIUM

we therefore request you reserve the dates : November 14th – 16th 2017 in your diary and encourage your colleagues to submit abstracts.

 

Workshop fee : The CDH workshop fee - which includes lunches and refreshments -  ‘ early bird ‘ rate - £ 250  - payment details to follow.

 

Abstract Format  - Aims , Methods , Results ,  Conclusions – 350 words maximum.

Indicate submission preference  – Oral or poster presentation category  

 

Abstracts mail to :  .(JavaScript must be enabled to view this email address)

 

Deadline for abstract submission  -  July 30th  2017

Abstract acceptance will be announced -  August 31st  2017

 

Please note :  The Peter Paul Rickham Symposium is a full 1 day event conference being held on November 16th 2017. The clinical & scientific programme for the Rickham meeting will be finalised and announced in Summer 2017.  ( Registration delegate fee / Social evening event with PPR dinner is also available for this 1 day conference  ).  Details here to follow in future 2nd announcement(s). 

 

Those delegates registering and attending the CDH International Workshop - a 2 day scientific meeting ( November 14th and 15th  ) will have a special conference fee rate ( £ ) also included for the Rickham Symposium which immediately follows on November 16th 2017 ) – to be confirmed.

 

Professor Dick Tibboel – Sophia Children’s Hospital , Erasmus University Rotterdam , Netherlands will deliver the 2017 Peter Paul Rickham Guest Lecture.

 

Hotel arrangements :   A list of hotels / delegate rates (£)  will be provided

 

Enquiries and further information :

 

Moira Saphier – Executive PA

Institute of Child Health

Alder Hey Children’s Hospital , Liverpool , UK

 Email : .(JavaScript must be enabled to view this email address)

Tel : + 44-151-252-5250

For registration please click on the following link: http://payments.liv.ac.uk/conferences-and-events/events-at-liverpool/institute-of-translational-medicine/congenital-diaphragmatic-hernia-international-symposium-and-peter-paul-rickham-symposium-nov-2017

 

 

Date: 06 Sep 2017 - 12:20 PM

CDH UK funds vital research to help improve outcomes for CDH patients

We are very pleased to be able to announce that CDH UK has agreed to fund the following research projects that have undergone a peer review process by Sparks Children's Medical Research Charity and will be fund monitored by Great Ormond St Children's Charity.

Building a functional muscle to repair congenital diaphragmatic hernia - Professor Paolo De Coppi - UCL institute of Child Health

Long term health and health service use in children and adults with congenital diaphragmatic hernia.- Dr Neil Patel - Royal Hospital for Children - Glasgow

COngenital Diaphragmatic hernia: Inhaled NO vs intravenous Sildenafil (CODINOS) trial - Professor Dick Tibboel - Sofia Children's Hospital, Rotterdam

Prenatal maternal sildenafil administration to prevent pulmonary hypertension due to congenital diaphragmatic hernia: final preclinical steps to a clinical trial - Professor Jan Deprest - Leuven, Belgium

The funding of this research has been made possible by the CDH UK Research Fund, which is the first of its kind for CDH. The fund is raised through the kind donations and fundraising carried out by our supporters and the general public. This is an ongoing fund to help improve outcomes for Congenital Diaphragmatic Hernia. Anyone wishing to know more about the CDH UK Research Fund, the research we are funding, or if you are interested in applying for funding, please contact .(JavaScript must be enabled to view this email address)

We would like to thank everyone involved and we are excited to be a part of this exciting research for CDH.

 

 

Date: 24 Mar 2017 - 03:26 PM

Call out for Research Grant applications goes live!

We are pleased to invite applications for Research Grants from the CDH UK Research Fund via our partner Sparks Children's Medical Research Charity, as from Friday 1st April 2016 until Wednesday 18th May 2016. Further information can be found along with application details via our Partner link.

CDH UK would like to thank all of it's supporters and donors who have helped us to raise an incredible amount of money for our Research Fund and anyone who would like to contribute by fundraising can email .(JavaScript must be enabled to view this email address) for further details.

http://www.sparks.org.uk/researchers/apply-for-funds/apply-for-a-grant-congenital-diaphragmatic-hernia/

Date: 04 Apr 2016 - 03:11 PM

CDH UK responds to the MBRRACE-UK Confidential Enquiry into CDH at Birmingham NEC

Wednesday 11th December 2014 saw MBRRACE UK launch it's first confidential enquiry report into CDH to a large audience of clinicians, healthcare workers, public bodies, departments, charities and other agencies. Responses were made by CDH UK, BAPM, BMFMS, BAPS, Quality Assurance/NHS Screening Programme. CDH was the first topic chosen for the project and the report was much awaited. CDH UK's response to follow. Please read the lay report and the full report here:

LAY SUMMARY

https://www.facebook.com/l.php?u=https%3A%2F%2Fwww.npeu.ox.ac.uk%2Fdownloads%2Ffiles%2Fmbrrace-uk%2Freports%2FPerinatal%2520Deaths%2520Lay%2520Summary.pdf&h=5AQEgIRbf

FULL REPORT
 

Date: 15 Dec 2014 - 05:46 PM

CDH UK to speak at International CDH Conference in Rotterdam

June 28th is CDH Awareness Day Here is what we have going on!

'WEAR 4 AWARENESS' - encouraging everyone to wear a CDH Awareness item on CDH Awareness day on CDH UK has been invited to speak at this years CDH conference/workshop in Rotterdam, which has been arranged by Professor Dick Tibboel and colleagues on behalf of the CDH EURO CONSORTIUM,  and will take place at the Erasmus MC Sophia Children's Hospital, Rotterdam on the 9th-11th June 2013.  

The conference aims to provide all of the news and views with regards to CDH and is an opportunity for CDH UK to meet some of the worlds most eminent medics in the field of Paediatric medicine today. It is also a platform for CDH UK to talk about it's work to date and our future aims and objectives and to demonstrate our important role in supporting families and the medical profession. We also hope to meet other support groups and forge new relationships.

Our last meeting with some of these important and influential people was in Rome 2011 and again in Scotland in 2012.

The topics that will be discussed over the 3 day conference will be:

Etiology & Genetics

Developmental Biology of the lung

Prenatal Mudulation

Postnatal care: ventilation

Postnatal care: Pulmonary Hypertension

Long Term Follow up

We look forward to updating you on our return.

Date: 06 Jun 2013 - 09:20 AM

CDH UK welcomes Professor Jan Deprest as a Patron and Medical Advisor

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.

Date: 12 Sep 2012 - 12:54 PM

Our Medical Patron - Professor Paul D Losty MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed)

We are very honoured to have Professor Paul Losty MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed) as a Medical Patron and member of our Medical Advisory Panel for our charity.

Paul Losty is a Professor of Paediatric Surgery at Alder Hey Children's NHS Foundation Trust and the University of Liverpool. Professor Losty trained in General Surgery and Paediatric Surgery in Dublin - Ireland, Boston - USA  and Liverpool - England. Over the last 20 years Professor Losty has successfully cared for many babies born with CDH.  Working with a team of academic surgeons and scientists at the University of Liverpool, he has devoted a considerable part of his professional life to research new ways to better understand and treat the condition. Professor Losty established the 1st UK multidisciplinary follow up clinic for CDH and every month at the Liverpool Womens Hospital with NHS partners / fetal medicine specialists counsels and advises many families affected by CDH.  Professor Losty is a frequent keynote speaker at many national and international meetings. He has authored over 100 peer review publications including original articles and textbook chapters relating to CDH.  Professor Losty with a working party group of surgeons , obstetricians , fetal medicine specialists,  nursing staff, CDH UK and parents co-led the development of the NHS FASP care pathway for CDH.

Date: 07 Jun 2012 - 09:40 PM

‘More Questions than Answers?’  Rome Conference 2011

Hello everyone!

The 2nd & 3rd of February saw many important people gather together in Rome for the CDH conference ‘More Questions than Answers’.  We were honoured to have been represented at this important event by Brenda Lane & Beverley Power. The Conference was held under the guidance of the CDH Study Group and in collaboration with the CDH Euro Consortium. The Honorary Committee was made up of representatives from the Bambino Gesu Children’s Hospital in Rome and the meeting presidents were the highly respected Pietro Bagolan MD and Dick Tibboel  MD.

The contents of the conference touched upon the most debated aspects of CDH including Pathogenesis (cause, development & effects of CDH), prenatal treatment, ECMO, definition of stabilisation, surgical treatment and outcomes. This was in the form of invited lectures and pro/con debates.

We managed to meet with some highly respected and important figures within the field of medicine in between the lectures and debates and gleaned some useful information to assist with the issues that we feel are important to our families such as the information that we provide, how we support our families and the question of research.

As you will appreciate, over the two days a lot of information was received and some of it very in depth and spoken in the language of the medic at times. We have therefore chosen the areas that were of particular interest and have summarised below what we learned from these interesting lectures and debates.

To start, here is a brief extract from the opening talk by Professor Molenaar (Netherlands).

In the early days of CDH, patients were operated on without delay in the belief that the lung could then have the space to grow. By the mid 1980’s delayed surgery was implemented to allow for the patient’s condition to improve prior to surgery and then ECMO was introduced to deal with the sickest of patients with respiratory failure.  The question is; is it the Lung or is it the Diaphragm, or is it both that are responsible for the cause of CDH, or is it just bad luck or an accident of nature? Another question is the quality of life? This is debateable, but Parents should have full ability to decide.

We heard many interesting lectures and the cause of CDH was mainly focused on the genetic aspect and touched upon the possibility of a connection with Vitamin A. Research and studies have been carried out to find if there are any links to genes and interestingly deletions and mutations of certain genes and chromosomes have been evident, and also the possibility of an inherited gene. Much more research however is required in this area. Another interesting area into research is the use of stem cells and whether this therapy can be used in the treatment of CDH in the future. It remained inconclusive as to whether the lung or the Diaphragm is key in the development of CDH, or indeed whether both are involved.  Some studies have shown that Vitamin A may play a role, showing low levels of this Vitamin in children with CDH, however this was not the case with the Mother, who was shown to have normal levels. Vitamin A did show to accelerate lung growth in studies of Nitrofen models, but the administering of Vitamin A remains controversial due the risk associated with Spina Bifida.

It was felt overall that the prenatal diagnosis and prognosis of CDH has become much improved with the advanced scanning equipment that is available to sonographers & radiologists today.  It was recognised that  the Lung Head Ratio (LHR) measurement used in most institutions remains a useful tool for the prediction of the severity of CDH with a measurement of <1.0 indicating that the outcome may not be so good. The question of whether 3D ultrasound has a role to play in diagnostics was generally thought to have shown no particular benefits. The future of the MRI scanner as a diagnostics method was also questioned.

The overall conclusion was that there was a correlation between the size of the defect and survival and the presence of the liver in the chest cavity were also useful predictors of outcome.

The mode of delivery of the baby was very briefly touched upon, with one study showing a higher survival rate following a Caesarean section. This was thought to be due to the fact that there are more experienced medical personnel present at a C-section delivery. This provoked a question from Beverley to the speaker to clarify these findings and to suggest that if this is the case, then is this worth studying further and considering as a preferred method of delivery to ensure the attendance of a highly experienced team present at every birth of a baby with ante-nataly diagnosed CDH? Of course a natural birth is beneficial in itself, but can be long and unpredictable with staff shift changes etc. therefore the question is; is it difficult to plan the best team around these circumstances?

Both the subjects of FETO and ECMO remain controversial, with arguments for and against both of these therapies.

Whilst FETO is shown to have success in some cases, 50% of babies treated still die. FETO is a relatively minimally invasive procedure, but the risks still exist; premature birth, problems with removal of the balloon, possible lung damage and tracheal abnormalities. However, the fact remains that there is a success rate and lung growth does happen, but further well designed clinical trials, further discussions and better defined criteria are needed.

ECMO is primarily used as a rescue therapy in CDH and there is a certain criteria for its use. In some countries studies have shown improvements in survival rates with the use of ECMO, but also an increase in morbidity. The debate centred on the ‘quality of life’ of these patients and whether an ethical question comes into play. There is also limited availability of ECMO treatment in the UK with only 4 centres currently offering this therapy. It was suggested that there needs to be 2 to 3 countries involved for a successful ECMO trial to be undertaken to make conclusions on this mode of therapy.

With regards to ventilation techniques, it was shown that today we are seeing more survivors, but more cases of neurological damage. The damage effected on the lungs from ventilation injury was pointed out and there is no definitive proof whether HFOV ventilation is better than conventional  ventilation, one study did show that HFOV may have a benefit, but that it was also associated with a high mortality rate. There are still bioethical problems with ventilation and the question are babies being kept alive at any cost? was raised.

Repair of the hernia and timing was looked at and the consensus remains that surgery is better delayed to allow for stabilisation of the patient and a debate ensued as to the benefits of thorascopic repair compared to open surgery. The materials used to ‘patch’ the repair were discussed and biomaterials were discussed as a ‘patch’ for the future. Trials have been carried out using stem cells taken from amniotic fluid to create muscle and whilst this has a long way to go, functioning muscle was created. The materials currently used still have some unresolved problems with Gore-tex showing low re-occurrence in re-herniation. There was also some evidence that the requirement for a patch repair showed an increase in mortality and morbidity.

The psychological aspect was also discussed and we heard a talk from the Italian CDH Support group FABED (we were very pleased to have met their representatives). A talk was also given by a psychologist who explained the psychological affects that CDH has on families.

Follow up treatment is shown to be lacking in most countries and this was highlighted during a lecture and by studies into the development of children and in particular the motor & exercise functions. The conclusions of this study, is that follow up is recommended and an active lifestyle, as much as possible, should be implemented. Follow up will also assist with long term morbidity and the psychological aspect of CDH. We also commented on how strongly we felt about follow up and the need for psychological care for these children particularly as they reach early adulthood given the impact that their individual medical issues related to CDH may have on them.

So,  what did we learn and what benefits did we gain from our trip to Rome? Well apart from the fact the Italians make a great coffee and that a red traffic light at a pedestrian crossing means little to some drivers in Rome, we felt that our time and efforts were well spent and our personal conclusions are as follows:

FETO and ECMO still remain controversial and require much more research and further well designed trials. The survival rate, whilst claimed to be higher in some countries, still remains pretty much unchanged at around 50% overall. The cause is still unknown and the ‘Eureka’ moment is still to be had, but there are some interesting findings in recent studies into Genetics. There is an exciting prospect relating to stem cell research, which may have a role to play in future prevention and treatment and we will watch this closely. Vitamin A is also an interesting area and again we will watch with interest of any future developments surrounding this question and the need to investigate both the maternal and neonatal aspect. Identifying the pathology of CDH and associated anomalies is also required. Pulmonary Hypoplasia & Hypertension remain highly challenging and a defining factor in survival. Post natal ventilation techniques need to be evaluated and the use of drugs to treat Hypoplasia and Hypertension. Foetal intervention we felt has a role to play, but clearer criteria is required and also the inclusion of moderate CDH into that criteria. It is realised that there is a requirement for follow up of CDH patients and that parents should be given clearer information and choices. The exchange of data and information should be free between institutions and the collation of data is key to assisting with research and studies and instrumental in moving forward to find more answers.

As a charity, we came away with lots of medical information for us to study and evaluate and to refer to in the future. We also introduced CDH UK to many high profile medical professionals who were very interested to meet us and some of whom have asked for our assistance in helping them. We distributed our CDH Information Booklets and asked for feedback and we handed out our badges, which were very well received, with a hundred disappearing in no time! We involved ourselves in the debates where we felt we could make a valid point and the Italian FABED support group gave a lovely speech, which served to emphasise the importance of the involvement of Charities in the work of the researchers and to help the Doctor’s to provide the necessary information and empathy to families.

We now have new and important contacts to help us with our work and who we can also help in return with the provision of information from families. We are currently assisting a European organisation with information on CDH.

So it remains that there are still more questions than answers, but we have to remain hopeful for the future and in the meantime we will continue to support our families and the medical profession. As the saying goes ‘Rome wasn’t built in a day’

 

 

 

Date: 15 Feb 2011 - 07:36 PM