Cdh Uk - The Congenital Diaphragmatic Hernia Charity

We are excited to see the ERNICA website go live and we would love to hear your feedback on it 😀CDH UK is extremely proud to be a part of this exciting and important work and we hope that you will have a peek! http://www.cdhuk.org.uk/news/entry/ernica -website-goes-live/ #CDH #ERNICA

We have recently improved our financial bereavement support to families by upgrading our bereavement scheme to the new ‘Forget Me Not Fund’, which now includes financial help towards funeral costs, burial plots, cuddle cots (where charged), headstones and memorial plaques. We still provide professional bereavement counselling and personalised memory boxes on top of this and the maximum claim threshold has been increased. We have also introduced a new personalised memory fun...draising platform that releases next week 🌸 To find out more please email support@cdhuk.org.uk #CDH #Babyloss #ChildLoss #BereavementMatters #ForgetMeNotFund
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As you know, you lovely lot helped CDH UK to fund half a million pounds worth of research in 2017 and here is the first 12 month lay report from one of the projects we have funded. Principal Investigator: Dr Neil Patel based at Glasgow Children's Hospital. Research Title: 'Long term health and health service use in children and adults with congenital diaphragmatic hernia'
I you have any questions relating to the lay report please email research@cdhuk.org.uk... #CDH #CongenitalDiaphragmaticHernia #Research #cdhuk
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Who remembers the One Born Every Minute episode with Baby Kaiden who was born with CDH, but sadly didn’t survive? Well here is his little brother Noah who along with Mum Hayley, took part in Jog 4 June. This is a lovely way to pay tribute to a loved one and to help our cause. We are going to be setting up a new legacy fundraising page soon, so please watch out for details. Also due to the popularity of Jog 4 June, we are launching a new fundraising initiative very soon that we hope will encourage you to keep those running shoes firmly on your feet! 🏃🏽‍♂️🏃🏼‍♀️ #CDH #OBEM #InMemory

We are coming to Birmingham this year with our Butterfly Ball and we hope that you will join us for a great evening of entertainment and FUNdraising! Tickets are selling fast so make sure you get your’s here 👇🏻
https://www.eventbrite.co.uk/e/cdh-uk-but terfly-ball-ticket…
... #CDH #cdhuk #ButterflyBall
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Come and meet other families and CDH UK at our Cardiff Get Together! Click on the link for tickets 👇🏻
#CDH #event

Info courtesy of Wales online 👍🏻 https://www.walesonline.co.uk/…/suitabl e-give-your-baby-wat…
#HotHotHot

Someone said it was #ThrowbackThursday so we are throwing back to June and our Jog 4 June 4 CDH challenge and to the story of a little girl called Jess.........
Jessica was born five years ago with a left sided Congenital Diaphragmatic Hernia after it was picked up at Mum’s 20 week anomaly scan. Like many other cases, Jess was not expected to be able to do many activities that involved exertion, (such as running), very well (if at all), never mind complete a 26 mile challeng...e! Fast forward five years and well, take a look for yourself 👇🏻 #CDH #LookAtMeNow #Reasons4Research #CDHero
https://www.facebook.com/648617570/posts/ 10157608204962571/
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Look away now if you are squeamish! 🤦‍♀️
This was the moment that CDH UK was invited in to see how a CDH repair is done and the interesting thing about this is that it is in fact a CDH model that was created by a team Leeds Teaching Hospitals NHS Trust for training purposes, using some inexpensive common household ingredients/items. It was made (unbelievably) by using a glove box, non-adherent hydrocellular foam dressing, household foam and a collagen sausage filled with jel...ly! Brilliant! Well done Leeds 🙌🏻 Here is what Bev had to say.............. ‘To be able to see first hand how a Diaphragmatic Hernia is repaired was really insightful and helpful. It actually looked pretty realistic from where I was standing (from what I have seen on TV and apart from the theatre equipment etc. they don’t use desk lamps! ) It reaffirmed for me the skill of the paediatric surgeons who are operating on these tiny newborns and the care and attention to detail that they have to demonstrate. Even down to the type of suture they use. It also reminded me of the importance of two way communication between charities like CDH UK and tertiary centres so that we are aware of the research and development so that we can better support patients and their families and be truly complimentary to professional healthcare’ #CDH #cdhuk #moderncharity #BAPSCongress2018 #WorkingTogether
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‘My son he leaves primary today and was born rcdh and had experimental feto surgery he was only given a 3% chance of survival without intervention and am so proud of where he has come today! To think they said he would never make it I'm so proud of him’ ~ Mum #CDH

We have named today Madison Monday 🙌🏻 Here’s why 👇🏻
Madison is 12 and decided to take on a fundraising challenge in memory of her big sister Jessica who sadly lost her battle with CDH at just 2 days old. She entered a 50 mile in July challenge after starting running a few weeks before, and she's completed it in just 22 days. Attached is a picture and a link to her fundraising page. ... https://uk.virginmoneygiving.com/MadisonH owell1
Fantastic Madison and well done!!!! #CDHero #CDH
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We had a great few days at the BAPS/BAPES International congress, which is an event for Paediatric Surgeons, Paediatric Endoscopic Surgeons and other medical professionals from all over the world to network and learn about new and innovative research and development and to celebrate the amazing work of the medical profession. We were very honoured to have been invited to attend by the new President Richard Stewart and to meet the other invited charities too, who support othe...r conditions. We were also honoured to meet the outgoing President Professor Mark Davenport who has done a fantastic job over the past 2 years. We wish Richard all the very best in his new role and we are looking forward to our new and exciting relationship with the British Association Of Paediatric Surgeons. Thanks to all of you who popped by our stand to say Hello 👋 #BAPS #BAPES #BAPSCongress2018
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First of the #Jog4June medals have arrived with their proud owner! Look out for your’s arriving in the post! #CDH #CDHero

An emotional week for lots of our families, as children have their last days at nursery and school and of course a very difficult time for our bereaved families who are missing these milestones.
‘Olivia, born with LCDH, first and last day at primary school. We didn't think we would see this day, she is an inspirational, strong willed young lady!’ ~ Mum
#CDH... #Support #cdhuk
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If you were at the British Association Of Paediatric Surgeons (BAPS) congress, what questions would you be asking? Put your suggestions as a comment 👇🏻
#Opportunity #CDH... #BAPSCongress2018
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We are sending a HUGE #ShoutOut to LIPA Primary School and Pupil Faith who raised lots of awareness and funds for CDH in memory of Faith’s big sister Chloe-Elise who had CDH. Faith alone raised m £432.50 and raised lots of awareness for #CDH Click on the page link below and see what they did 👇🏻

All ready to go at the joint BAPS BAPES congress 2018! Ready to represent all of our families and promote our work wiith ERNICA and IDEA too!
Here are Members of our team Bev & Kerrie waiting for the delegates. 👇🏻 #cdh #BAPScongress2018... #BAPES #NHS
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For the next 3 days we are at the BAPS International Congress in Liverpool showcasing the work of CDH UK, meeting medics and learning new things! We are really looking forward to it. If you are a healthcare professional attending the event please pop by our stand and say ‘Hello!’ 👋 #CDH #BAPSCongress2018 #BAPS... #BAPES
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Our first priority is supporting families and helping to make their CDH journey that bit more comfortable where we can, such as helping with the cost of hospital visits, helping with bereavement and counselling costs, or helping a patient and their family get out and about more easily, or helping to organise oxygen and equipment for travel and even paying for costly travel insurance premiums. See more on our website and find the application forms: http://www.cdhuk.org.uk/need...-our-help/ #CDH #support #cdhuk #ERNICA #IDEA #MakingADifference
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Join us in October for our Butterfly Ball! An evening of entertainment and FUNdraising! If you purchased earlybird tickets, you will soon be receiving your tickets by email and if you haven’t yet ordered your tickets then don’t delay! #cdh #cdhuk #ButterflyBall The link is below 👇🏻... https://www.eventbrite.co.uk/e/cdh-uk-but terfly-ball-ticket…
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we do not have personal knowledge of the effects of CDH but were deeply affected by the episode on One Born Every Minute and have nothing but admiration and respect for the bravery and dignity you have shown in your personal lives and how you have helped others through what must be the most traumatic experience of having very poorly babies, CDH is truly inspirational and deserves every plaudit and support it gets.

it helps you to know that your not alone and you can chat outher parents about things. my son is 11 now and he is doing brill but thay are always their if you need a chat.

When my son was born with rcdh it was a total shock and cdh uk were are go to people for facts along with support. Keep up the good work, we would have been lost without you xxx

We cannot thank CDHUK enough for all the support that we have received since getting the diagnosis in pregnancy through to the huge loss of our son Max. CDHUK has been there for us at every step.

This charity helped me through my pregnancy, Zachary operation and Zachary death.

Always having a group to chat to and get support. I would have been lost without them .

The CDH website helped me and my husband through a very difficult time. It helped to answer a lot of questions and mentally prepared us. Thanking you so much. I will soon share our story about our beautiful baby girl who is now 3 months old.

Our 6 week old son has just been diagnosed with CDH and underwent surgery for it. This was a success and he is now recovering. Expert care and attention at both Ormskirk Hospital & Alder Hey (UK)

My daughter 6months old and she was born with CDH she is doing really well now still on oxygen and ng feed and waiting for a couple more ops but she full of smiles

I wish my late brother who was born with a congenital diaphraphic hernia had known about this amazing charity. It's a shame it didn't exist when he was born in 1979. Still I've discovered it and am very impressed with the amazing work they do for babies, children and adults with this condition. If any charity I support, it's this one.

I love the continued support from diagnosis, through pregnancy and unfortunately in my bereavement! I love the close sense of community that you get from the charity and the "family" feel from the forums! I honestly would have been lost without CDH UK on my angel Layla's CDH journey! Xxx

Hi everybody! We are from Israel and finally can get information thanks to your page. 2 days ago i've been through Acupuncture amniotic fluid to know if our baby have chromosomal problems and then we saw the doctor face... telling us that now we have bigger issue to worry about. In Israel we have only one hospital and one cdh expert doctor that we can talk to . First we waited to get the results of the amniotic fluid- everything is fine. Now, we dont know what to do. The expert doc, recomended the fetal surgery (with the baloon). I would like to get more details from people that agree to the surgery, what happened with your babies through that treatment and after.

Thank you so much for caring!!

Sorry for any spelling mistake.

Fantastic place for information and support. The only reliable one in the UK. Our daughter was diagnosed with CDH at her 20 week scan and we got great support from the Secretary and the support group for expecting families. Unfortunately our Beth passed away aged 10 days but the support continued and does to this day. The charity has the balance right between supporting families financially and raising money to fund research. They support the medical profession to try and improve the information given to parents and achieve consistency in care. There are fantastic events like family get-togethers all over the country and an annual ball so you really feel part of a big community. Thank you CDH UK and all your hard working volunteers.

CDH UK is a fantastic charity who have supported us in our CDH journey. The charity has provided practical and emotional support at a time when it was needed. The CDH UK website has helped our friends and family understand more about the condition enabling them to provide more support to us. Thank you CDH UK for supporting us through the last 6 months and the future!

An absolutely Fantastic charity, who helped me every step of the way, and still do whenever I need them. If there were 6 stars, I'd award 6.

Amazing charity! They helped us with the funding for a pushchair for our daughter ,to help us carry her oxygen cylinders. She was born last August with a right sided case of CDH and through all odds survived. She is our precious little mirical

Brilliant for people who are currently dealing with the turmoil of cdh, wish I had this when I had my harry born with cdh Dec 2007 only surviving 12 days