Coronavirus Support & Information

The Coronavirus (COVID-19) has been affecting people across the world, you might be worried about what this means for you and how it might affect your life.

We’ve put together some basic information as well as an update on how the outbreak is going to affect our work at Tiny Tickers.

Latest Information

Please follow NHS advice and Government guidance for up-to-date information as the situation continues to develop.

JANUARY 2021 UPDATE: BCCA immunisation guidance.

Covid-19 vaccinations are currently being carried out in the UK. Prioritisation for the vaccine has been outlined by the UK Government.

Read the BCCA guidance for immunisation here.

DECEMBER 2020 UPDATE: BCCA publishes data on COVID-19 and CHD

The British Congenital Cardiac Association (BCCA) is conducting a national study on the impact of COVID-19 in patients with congenital heart disease. In advance of this, they have submitted a short review of the available literature, which has been published in Cardiology in the Young.
Despite the small amount of data available at this stage, the paper concludes that some “tentative conclusions” can be drawn, including that “the mortality of patients with CHD affected by COVID-19 appears low, and the disease does not appear to impact a specific form of CHD.”

You can read the full paper here.

Please note we are not medical professionals therefore if you require specific advice please call NHS 111.

Latest British Congenital Cardiac Association Advice

Tiny Tickers has been working with the British Congenital Cardiac Association (BCCA) and NHS England to answer the questions most commonly asked by those affected by CHD. The latest advice below was published on 11th November 2020, and follows previous advice that those in the clinically extremely vulnerable group no longer need to follow previous shielding advice. There appears to be a very low risk of children becoming very unwell from COVID-19 and some children previously placed in the extremely vulnerable group may now be classed as less vulnerable and this should be discussed with you cardiac team.

BCCA updated guidance for patients, parents, charities and support groups in light of national lockdown for England (11 November 2020)

Guidance from the BCCA, published on September 2nd, 2020: BCCA updated guidance for patients, parents, charities and support groups: Returning to work and education

This guidance document from the BCCA, was published on June 11th, 2020. Click to read a PDF of the advice: BCCA CRG – CHD and COVID-19 11 June 2020

Alternatively, click here to read this advice, and more, on the BCCA’s website.

Latest Government Advice

Lockdown measures are different in different parts of the UK. Please refer to the following pages for the latest guidance for where you live:

The UK Government website: https://www.gov.uk/coronavirus
The Scottish Government website: https://www.gov.scot/coronavirus-covid-19/
The Welsh Government website: https://gov.wales/coronavirus
The Northern Ireland Executive website: https://www.nidirect.gov.uk/campaigns/coronavirus-covid-19

What is Coronavirus

Coronaviruses are a large group of viruses that are responsible for different illnesses including the common cold. Coronaviruses are a large family of viruses which may cause illness in animals or humans. In humans, several coronaviruses are known to cause respiratory infections ranging from the common cold to more severe diseases such as Severe Acute Respiratory Syndrome (SARS). The most recently discovered coronavirus causes coronavirus disease COVID-19. This new virus and disease were unknown before the outbreak began in Wuhan, China, in December 2019.

How is coronavirus spread?

The coronavirus is spread by droplet infection – coughing and sneezing or by close contact with someone who has the virus.

Like the normal cold virus, it’s spread from one person to another. To reduce the spread of viruses like these, the World Health Organisation strongly advises you cover your mouth and nose when sneezing using a tissue. (If you don’t have a tissue, sneeze into your elbow instead of your hands.) Put the tissue straight into a closed bin. Wash your hands with soap and hot water and try to avoid people who cough and sneeze by keeping your distance or if you know someone who is currently unwell with the symptoms.

wash your hands with soap and water often – do this for at least 20 seconds
always wash your hands when you get home or into work
use hand sanitiser gel if soap and water are not available
cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
put used tissues in the bin straight away and wash your hands afterwards
try to avoid close contact with people who are unwell

My child has a heart condition – what should I do about Coronavirus?

The latest guidance has been developed in association with the NHS England Clinical Reference Group and patient organisations including us here at Tiny Tickers.

This continues to be a worrying time for patients of all ages who are living with congenital heart disease, particularly for those clinically extremely vulnerable patients who have been “shielding” at points during the COVID-19 pandemic.

Government advice in all parts of the UK is that shielding is no longer necessary so that clinically extremely vulnerable patients can return to education or to work.

It also discusses other CHD conditions and the measures patients should be taking, and the current situation with services nationally.

Read the full BCCA guidance here.

Anyone who is concerned for their child’s health should contact their doctor, nurse, specialist centre or CHD nursing team for advice. The NHS advise “Do not go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak to someone.”

Follow the same recommended precautions about good hygiene.
Try to lead a healthy lifestyle – eating a healthy diet including plenty of fruit and vegetables, taking regular exercise and getting plenty of sleep – as this will help the immune system to deal with any infection.
If you or your child do feel unwell, it’s still really important to carry on taking any medication prescribed. Ask someone to collect your prescriptions from the pharmacy if necessary.
You can also contact your specialist cardiac nurse should you have specific cardiac-related questions

How to talk to your child about coronavirus

News of the Coronavirus is everywhere, on TV, social media and in most conversations. Many parents and carers are wondering how to bring up the epidemic in a way that’s reassuring and informative. Here’s a few Tiny Tickers top tips help;

Find out what your child already knows

Ask questions at your child’s age level. For younger children think about asking them if they have any questions about the new ‘sickness’ or why we’re all staying at home to make it easier. Once you learn how much your children know you can help fill any gaps or correct any incorrect information they’ve seen or heard.

Follow their lead

If your children don’t want to talk or don’t seem interested- don’t push it. It’s okay for them to not have any questions.

Be honest

If your child asks about something and you don’t know how to answer, say so. Explain that most people who get sick feel like they have a cold or flu.

Young children might find it reassuring to know that hospitals and doctors are prepared to help whilst older kids might be more comforted to know that scientists are on the case.

It’s okay to not be okay

Let your children know that it’s normal to feel stressed, anxious or upset by what’s happening. Everyone feels these ways sometimes. Recognising these feeling and knowing that stressful times pass in time can help build resilience.

Just make sure you give your kids space to face their fears. It’s natural to worry about yourself, your parents, your grandparents. Just let them know that you’re there to listen, answer questions or just play games as a distraction.

Looking after yourself

Other sources of information

How is Coronavirus affecting Tiny Tickers

Even though we are facing a huge public health emergency, a baby will still be born with a serious heart condition every 2 hours. That fact remains. As does the fact that we will now need to do even more to protect them, their families, and the health professionals that look after them, over the coming weeks and months.

Our CEO, Jon Arnold, has published his latest blog on how we’ve been navigating these past few months and how we, as a team, have continued our support for families across the UK.

“We’re now facing the close of a very difficult year and it all seems to have passed in a blur. The initial fear turning into a dawning realisation that there will be no quick return to ‘normal’ life.

I hope your family and friends have remained safe and healthy during the pandemic, but the raw statistics suggest that, for many of you, that will not have been so. In which case, I offer the love and support of everyone involved with Tiny Tickers.” Jon’s full blog is available here.

Core funding is the most critical concern for us given that we are facing a potential loss of unrestricted funds this year of 46%. More babies will be born with CHD due to fewer pregnancy scans, more families are struggling with receiving information about what a diagnosis means, and more families are needing our support; at a time when we have less time to give that support.

For regular updates please do keep an eye on our social media channels or sign up to our regular newsletter here.

Antenatal Support

Finding out your baby has a congenital heart defect is always difficult and with the uncertainties and restrictions around covid-19, we understand that you may have even more questions. The following advice and information has been collated to answer some of the most common concerns and we are here to support you during this difficult time.

This advice will be updated as new guidelines and information is available.

If you are pregnant and have been told your baby has congenital heart disease:

Currently, there is no evidence that COVID-19 causes CHD and there is no evidence that it will make the heart defect worse.
There is no specific guidance for pregnant women who have received an antenatal diagnosis of CHD for their baby
In general, pregnant women are currently being advised by the NHS that they are in the ‘moderate risk’ (clinically vulnerable) group and pregnant women who have CHD themselves are considered high risk. As long as mum is well and is following all the advice, there is no further risk to the baby
Pregnant women from black, Asian and minority ethnic (BAME) backgrounds are more likely than other women to be admitted to hospital for coronavirus. Pregnant women over the age of 35, those who are overweight or obese, and those women who have pre-existing medical problems, such as high blood pressure and diabetes, also appear to be at higher risk of developing severe illness.
It is really important to still attend any antenatal appointments you are offered during your pregnancy as long as you are well and not suffering any symptoms of coronavirus. If you have any concerns about attending any appointments, please discuss these with your midwife or maternity unit.
If you have symptoms of coronavirus and/or are self isolating, let your midwife know and they will advise and reschedule your appointment
Your hospital appointments may be different to how you imagined. Most hospitals have restrictions in place regarding scans and you may have to attend alone. Hospital staff may be wearing protective clothing such as masks, aprons and gloves
Please do remember to have your flu vaccine because getting flu when you’re pregnant can put your baby at risk.
Some useful links to further information:
https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk-from-coronavirus/pregnancy-and-coronavirus/
https://www.rcog.org.uk/en/guidelines-research-services/guidelines/coronavirus-pregnancy/covid-19-virus-infection-and-pregnancy/

Preparing to give birth for women having received an antenatal diagnosis of CHD for their baby

Planning your birth may be different to how you imagined, you will be able to speak to your midwife or cardiac liaison nurse about your options and who can attend. Some general advice can be found here.
There is no evidence that women who are well are more at risk from coronavirus after having a baby.
As always, if you have any questions about yours or your baby’s health, please contact your midwife, doctor or cardiac liaison team. It’s really important that you do not avoid seeking medical advice if you have any concerns.