Many of you may be worried about the Novel (Covid-19) Coronavirus situation and you may be seeking some advice, particularly if you or your child have any complications or ongoing medical issues. CDH UK has not to date received any specific advice relating to the CDH population and we advise you to keep up to date with advice according to the Department for Health for the country that you live in or are currently visiting. We will of course update should we receive any different advice.
UPDATE 17/04/2020 – We are aware that some patients have now received shielding advice letters or texts. Letters are still being sent out, but if you still haven’t received one by the 20th April we suggest that you contact your GP, particularly if you have a member of your household who is still working or looking after another vulnerable person. It may be that your particular circumstances mean that you may not be considered high risk and that you will not receive a letter. If you think that you, or a person that you are caring for should be considered as high risk despite being told otherwise, we suggest that you contact your medical advisor who knows about your medical history and seek further advice from them. In the meantime we continue to advise the CDH population to remain cautious.
UPDATE: ERNICA Covid-19 statement https://ern-ernica.eu/news-events/news/ernica-covid-19-statement/
PLEASE NOTE: The UK Government has issued updated guidance on Shielding and protecting people who are extremely vulnerable and due to the lack of clarity on the position of patients with complications of CDH and the fact that the main issues with CDH patients are the lungs, gastrointestinal issues and feeding challenges, we are recommending following this latest guidance in the absence of specific advice for the CDH population;l unless advised differently by a Healthcare professional that knows about you and your ongoing issues. You can read the full guidance here Guidance on shielding and protecting extremely vulnerable from Covid-19
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Here is a link to the UK Department of Health advice https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public
Here is a link to the Irish Department of Health advice https://www.gov.ie/en/campaigns/c36c85-covid-19-coronavirus/
For other countries or regions please search for them using your web browser and type in ‘Department of Health for’ followed by the country you require information on and press enter or alternatively use the World Health Organisation (WHO) website link https://www.who.int/
We have compiled a list of Q & A’s based upon what we have been asked by patients and families so far (these may change over the coming days and weeks):
- Q: Is Coronavirus (Covid-19) particularly dangerous for those who were born with CDH or Eventration of the Diaphragm or who were diagnosed with either of these after birth?
- A: We really don’t know the answer to this because this is a new virus and the Scientists and Doctors are learning about this virus themselves. However, the Government have listed Asthma, COPD, Chronic Lung Disease and Cystic Fibrosis in the vulnerable category and because these are all conditions that affect the lungs we feel that patients should be cautious and protect themselves from getting the virus by practicing the advice given by the Government for vulnerable members of the public. As we learn more, this advice may change.
- Q: I am pregnant and worried about Coronavirus, what advice should I follow?
- A: The Royal College of Obstetrics & Gynaecology (RCOG) has issued some advice for Pregnant women in general. Here is the link RCOG advice on pregnancy & Coronavirus
- Q: I am still working but I am worried that I may be exposed to the virus and take it home?
- Q: I haven’t received a shielding advice letter?
- A: speak with your GP or your regular Consultant – be aware that contacting medical professionals may take longer than normal at the moment.
- A: Speak with your Manager and discuss your concerns. This will be a decision that you will need to make based on your circumstances and current evidence.
- Q: Can I still take my child out?
- A: Please see the current advice for vulnerable members of the public. If you can’t go out, then have some fresh air in the garden and if you do not have a garden open doors and windows to get some fresh air or stand at the door and take some deep breaths.
- Q: What can I do to prepare for isolation?
- A: Ensure that you (or your child) has enough medication, feeds, medical supplies such as; dressings. oxygen supplies etc. Contact your GP, pharmacy or company who supplies them and check if there are any new procedures for prescriptions during this current crisis and that should there be any difficulties in obtaining normal medications or supplies etc., what you will need to do. Inform family and friends that you are isolating and ask them to drop things on your doorstep (if you need anything). Try do some exercise such as putting some music on and dancing, or going up and down stairs (if you have them), or if you have You Tube or a game system, put some exercise instructional videos or games on. You could even do some party games like Hokey Cokey or musical chairs! Yoga and Pilates are other activities that are great for adults and children alike. Recent research shows that children with CDH benefit from being active (if they are able). DO NOT hesitate to seek further medical advice IF you or your your child deteriorates.
- Q: How can I help to support a healthy immune system as my child will only eat certain foods?
- A: Don’t worry about this, as long is your child is eating how they normally eat then that is what matters. you can if you wish speak with your GP, Health Visitor or Pharmacy about giving supplemental vitamins, however some vitamins can react with medications so please check before taking/giving them.
- Q: Should I attend my clinic and hospital appointments?
- A: If you are currently NOT displaying any symptoms as outlined by the Government, NHS, W.H.O or Public Health England then unless advised otherwise, you should still attend. If you are unwell or displaying any of the symptoms (no matter how mild), contact the clinic or surgery that you are due to attend for further advice.
- Q: What happens if I become unwell and I don’t know whether the symptoms are related to Coronavirus (Covid-19) or CDH?
- A: Do not delay in contacting 111, your GP, or contact the Children’s Ward if you currently have open access. If you or your child become seriously unwell or you think that it could be a reherniation or other serious complication do not hesitate to take your child to A & E or call 999 as you would normally do in this situation.
- Q: What are the symptoms of Coronavirus (Covid 19)?
- A: Please see the above links or Video
- Q: How can I help myself or my child to remain mentally healthy?
- A: Stay calm and try to explain in easy to understand terms about the current situation. Try to do things that make the situation beneficial such as more family orientated activities such as cooking and baking, art and exercise and chatting about how you feel and how to help each other. Children are very adaptive to situations and will love spending time doing things as a family unit. It can of course be difficult if you have a few children and you are all stuck indoors, but look to doing things like sorting out bedrooms, spring cleaning, watching a film or having a pamper session, take part in some fundraising activities (see our social media posts)……..be creative! Lot’s of you will be preoccupied with home schooling during the day and if you are struggling with this then contact the school for help and further online aids etc. Face Time family and friends or chat on the phone. Remember we will get through this and things will eventually return to some normality. Our support channels are always open to you too.
- Q: How do I contact CDH UK?
- A: Our freephone support line is open Mon-Fri 9am-5-30pm (reduced hours), Our email is firstname.lastname@example.org and is always available. You can inbox our Social Media accounts 24/7 and we will respond ASAP.