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.
London to Brighton 2021
LHM Den-Building Challenge
We would like to invite you to join our online Den-building challenge / Zoom hangout.
We recently came across IKEA’s quarantine campaign, showing you how to build fun structures out of pillows, blankets and furniture. So we thought this would be a fun activity for both adults and children of LHM to try for a much-needed distraction during coronavirus lockdown.
The challenge is simple, use items around the house to transform your living room into a den, we will then all meet up on Zoom to have a catch up and present our creations!
Don’t forget to download and print off this colour-in LHM Flag Template
We will meet on Saturday 30th January at 3:00 PM.
Family Christmas Party
We would like to invite you to join our online Family Christmas Party – there will be lots of fun, games and competitions during the afternoon’s festivities. Make sure to look out your Christmas jumpers to wear…
Unfortunately the deadline to apply to join this party has passed.
We look forward to seeing our members there.
In Memory Walk – 17th October 2020
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.
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
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
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
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
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
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.