The cardiologist Dr Constancio Medrano, president of the Spanish Society of Paediatric Cardiology and Congenital Heart Disease (the Spanish equivalent body to the British Congenital Cardiac Society or BCCA who LHM consult in the UK), has done two Facebook live broadcasts, on 6th April and 24th April, talking about the Spanish experience of Coronavirus and how children with congenital heart disease had been affected so far.  These events were organised by the charity ‘Menudos Corazones’, which is a Spanish charity supporting families of children with a congenital heart condition.

We are sharing this information as it relates specifically to congenital heart disease; however there are aspects of the public health policy in Spain which are different to those in the UK, so the Spanish experience cannot be used to predict what will happen in the UK.  Please continue to contact your child’s medical team with any concerns you have and continue to follow the guidance, which has been set out for you, or the decisions you have made as a family about how best to cope during this time. 

In the whole of Spain, around 700 children have had a Covid-19 infection and 32 have been admitted to PICU (paediatric intensive care). Sadly four children have died, but the others appear to be making a good recovery and the majority have only had mild cases of the virus.  Nobody yet knows why this is the case, but it does seem that young people are less affected than those over the age of 55/60.  In Spain, children up to the age of two have been most affected, but those over the age of two and including young adults have not been severely affected. 

Cardiac teams in Spain have started to collect information about children with congenital heart disease (CHD), and the information gathered to date suggests that around 20 children with CHD have been diagnosed with Covid-19, including some with a Fontan circulation and some who were post-Glenn.  Most had experienced good outcomes.  Medical teams had been particularly careful with children with low oxygen saturations, hypertension and also those taking certain medications such as Captopril and other ACE inhibitors..  Dr Medano stressed the fact that families should not change their child’s medication and should continue to follow the advice of their cardiologist, made  ( UK doctors have seen no data that shows an increased risk in children who take ACE inhibitors and ask that no change to medication should be unless a congenital cardiologists suggests it), even though medication may need to change if the child were admitted to hospital with a confirmed case of Covid-19. 

Throughout both of these online events, Constancio Medrano emphasised the importance of following strict hygiene procedures such as hand washing, and following government guidance such as social distancing.  He also advised seeking medical advice if a family had any concerns, particularly if a child has a temperature and/or difficulties breathing. 

On a couple of occasions, he mentioned the need to avoid any contact with possible sources of infection.  One family asked whether young adults with CHD should be going to work, and the response was that it depended on the type of work: somebody with CHD should avoid working in a care home or hospital at the moment for example. 

In Spain, all children have been kept at home for a number of weeks since the beginning of the outbreak, and are now being allowed to leave the house again, but with very strict guidelines.  They must only go up to one kilometre from their house, for up to one hour, accompanied by an adult, and without contact with other people (ie observing strict social distancing).  Constancio was asked by a number of parents whether he felt children and young adults with various types of congenital heart disease should leave their home following this change in policy.  On each occasion, he replied that they should follow the advice given to the general population as congenital heart disease had not so far proved to be a significant risk factor in children diagnosed with Covid-19, and he felt that the physical and psychological benefits of leaving the home were important for all children, though he did understand how frightened families may be.  At the same time, he again stressed the need to follow government guidance on social distancing and to adopt strict hygiene measures.  He also mentioned that there may be individual cases where this advice may not apply and so certain children may still need to be kept at home. 

He closed the second event by suggesting that we need to try to normalise life for all children including those with CHD – exercise, general wellbeing and education are all important – but we must also be very careful.  Covid-19 is unfortunately not going away, so we need to try to find ways to continue with life, but anyone with any doubts or questions should consult their child’s medical team. 

Translated by Isabel Baumber.

To watch the original follow the two links.

  1. https://www.facebook.com/MenudosCorazones/videos/213688649858615/?fref=gs&dti=907062199364073&hc_location=group
  2. https://www.facebook.com/watch/live/?v=246435209773648&ref=watch_permalink

In Memory Walk – 17th October 2020

17 October 2020, 10.00 - 14.00 National Memorial Arboretum, Staffordshire

On Saturday 17th  October at the National Memorial Arboretum in Staffordshire we will be holding our Autumn Memorial Event 2020.  This walk is a special event for our bereaved families, but all are welcome to come and walk together to remember and celebrate the lives of children lost.

This is a very friendly day where we meet together, take a guided walk through the Arboretum Park and then have lunch together.   As last year we are adding in some crafts for both the children and the Mums and Dads.

This event starts with registration and coffee at 10a.m. with the walks starting at 10.30a.m.  If you are interested in attending the event then please fill out the form by clicking here.

 

 

TrekFest 2020

19 September 2020 Brecon Showground, Canal Bank, Brecon, Powys, LD3 7PL

Choose your distance and make every step count for children with half a heart! With 25km and 50km routes to choose from, whether you walk, jog, or even run you’ll be challenging yourself in one of the UK’s most beautiful national parks – the Brecon Beacons, South Wales. Full of incredible scenery, rolling countryside and impressive mountains, the Brecon Beacons National Park is also an SAS training ground – expect stunning yet challenging terrain! Click here for more information.

 

Annual Memorial Event 2020

3 May 2020, 10.00 - 14.00 National Memorial Arboretum, Staffordshire

We will be holding our Annual Memorial Event on Sunday 3rd May 2020 at the National Memorial Arboretum in Staffordshire.   At this event we hang hearts on the tree and listen to music and then we all sit down to have a picnic together, this is a very special event for our bereaved families, but all are welcome to come along.

To sign up to attend this event, please click here 

LHM Open Day & AGM 2020

14 March 2020, 09.00 - 18.30 B30 1LS

The Fontan Pathway

OUR OPEN DAY EVENT, WHICH HAS BEEN RE-ARRANGED FOR 21ST NOVEMBER 2020, IS NOW FULL.  IF YOU FILL IN THIS APPLICATION FORM THEN YOU WILL BE PUT ON A WAITING LIST.

We are delighted to be able to invite you to our Open Day and Annual General Meeting. Our Open Day runs from 10.00 a.m. until 4.30 p.m. followed by parties for the children until 6.30 p.m. Our AGM will be held during the day where the Trustee Board will present an overview of the year’s work, the annual accounts and conduct trustee elections.

The next Brave Heart Awards will be presented during the day. For more information on the awards and to apply click here.

The focus of this event is the Fontan Pathway. The build up to surgery, the challenges of recovery and the lifestyle challenges faced by the children as they grow up with a Fontan circulation. We have linked the children’s and youth sessions so that there is a flow of age appropriate information across all of our workshops.

So every parent has an opportunity to gain as much from the workshops and speaker sessions we also have a qualified crèche facility.

Click here to find out more about the day, complete your application to attend and if NOT attending, vote on the AGM resolutions.

We know that some members have to travel a long way to get to Birmingham and the costs can make the event out of reach for some families. Click here to find out more about our Bursary Programme to help with some of the costs.

The number of members wishing to attend increases each year so we have to limit numbers. Please could you complete the application form As soon as possible if you wish to attend. We will them email you to confirm your place.

Newcastle Family Event

19 February 2020, 10.00 arrival - 16.00 Discovery Museum, Blandford Square, Newcastle upon Tyne NE1 4JA

We are so pleased to be able to offer a fun day at the Discovery Museum with Little Hearts Matter.

On Wednesday 19th February Suzie and Lexie will be coming up to Newcastle to offer workshops for parents, young people aged 8-18. Under 8’s are welcome to come but will have to be supervised by parents. These workshops will be planned around topics we know are very important to you. It’s also a great opportunity to meet up with other parents and young people in a similar position to you. Following our workshops we will have lunch you are then welcome to join Suzie and Lexie as they explore the museum.

Places are limited, it is first come first served and completely free. Please be aware if there is a high demand then we may limit the number of places per family.  To fill out an application form and claim your places today click here.

LHM Volunteer Fair 2019

9 November 2019, 09.00 - 16.00 The Beeches Conference Centre, Bournville, Birmingham

The LHM team are so grateful to all the amazing volunteers who help us to run the support, awareness and fundraising sides of the charity. Without them we could not reach as far as we do across the country.

We receive many requests to join the volunteer teams but often our kind supporters do not really understand what sort of volunteering is on offer so this November we are running a Volunteer Fair on Saturday 9th November at The Beeches Conference Centre, Bournville, Birmingham.

If you are interested in exploring volunteering and would like to attend the event, click here to fill our the form.

For more information on the types of volunteering roles available click on the job descriptions below.

Great South Run 5K 2019

20 October 2019 Southsea

An undoubted attraction of the Great South Run 5K is the fact that there is not a hill in sight! This great course is perfect for first-time runners with an almost perfectly flat course and lovely views across the Solent to the Isle of Wight. Follow the link to the right to find out more or apply for your own place.

If you get your own place in the Great South 5K, be sure to let us know so we can cheer you on through your training and send you our fundraising pack.

Scotland Family Event 2019

17 October 2019 EH12 6TS

We are so pleased to be able to offer a fun day at the zoo with Little Hearts Matter.

On Thursday 17th October Suzie and Lexie will be coming up to Edinburgh Zoo to offer workshops for parents, young people aged 8-18. Under 8’s are welcome to come but will have to be supervised by parents. These workshops will be planned around topics we know are very important to you. It’s also a great opportunity to meet up with other parents and young people in a similar position to you. Following our workshops we will have lunch and a panda experience. Entrance to the zoo will also be included, we do hope you’ll join us in spending time in this gorgeous zoo.

Places are limited, it is first come first served and completely free. To fill out an application form and claim your places today click here.

Simplyhealth Great Birmingham Run 2019

13 October 2019 Birmingham

Entries are now open for 2019 so take your place as the city comes together for this half marathon challenge. Experience the support of the community all the way along the 13.1 mile course through the heart of Birmingham.

Our Charity places have a discounted registration fee of £25, and we ask you to raise a minimum of £300.

Have your own place?

We’d love you to join TeamLHM! Please let us know by emailing [email protected] and we can support you with your fundraising.

Bournemouth Marathon 2019

6 October 2019 Bournemouth

The Bournemouth Marathon is running as it should be. Beautiful coastal views, a chance to run the Boscombe and Bournemouth piers and a spectacular finish.

Little Hearts Matter has charity places in this marathon and we’d love you to join our team! Apply by following the link to the right and we’ll be in touch soon to confirm your place, or you can contact us for more information.

Be social with us - our latest tweets and posts

    “Thank you very much for Chris' card. I cannot believe he is 18 and am so proud of the lovely young man he has become, overcoming the many challenges we have faced over the years, especially in the first 4 to 5 years. Thank you Little hearts matter for always being there.”

    Thank you to Chris and mum Philippa for sharing this fantastic news with us, we hope this brings some inspiration to the many families out there who are at the start of their half a heart journey.

    With YOUR help, we can continue to support the amazing young adults living with a single ventricle heart today, just like Chris here. All you need to do spare 30 seconds of your time every day to vote for LHM in Persimmon’s ‘Building Futures’ initiative.

    They don’t ask for any details, you simply click our logo on this page; biy.ly/support-lhm

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    So pleased to see Amelia here, DILV, enjoying some cycling along with her sister Evie…

    “We’ve been doing a lot of cycling this week as both girls have grown in confidence. I’m amazed at Amelia’s stamina on the bike, doing much more exercise than she’s ever done. This is the girl that needs a buggy to get home from school (in normal life). She’s found a sport that she can comfortably do. She says she feels free when she’s cycling. That makes me happy and sad at the same time ❤ “Cycling makes me feel free, happy and like nothing is in my way””

    Riding a bike is great exercise for children, teenagers and adults with half a working heart. It helps get you from A to B but is also is supported exercise for the lower body and therefore provides good support for blood returning to the lungs. There are many incentives to help get you on a bike, at the moment.

    Learn more by jumping to our ‘get fit for winter’ resource here: www.lhm.org.uk/information/lifestyle-information/get-fit-for-winter/
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