Friday 26 July 2013

Jamie is one of the oldest young adults with HLHS in England


Suzie has just been sent this amazing photo of Jamie and his lovely sisters Emily and Olivia with their good friend Louise. Jamie is 22 and one of the oldest young adults with HLHS in England. It is great to see him doing so well. Suzie is showing her age by admitting that she was Jamie's liaison sister when he had his first operations in Birmingham. We hope to see Jamie and his family at our 20th Anniversary Open Day in March. We wish them all a great summer and thank you for the brilliant photo.

Feel Good Friday

Misunderstood Spider!

Thursday 25 July 2013

Summer Theme Park Trips: Do or Don't??


THE LURE OF THE THEME PARK - LITTLE HEARTS MATTER DISCUSSES THE RISK FOR YOUNG ADULTS WITH SINGLE VENTRICLE HEART DISEASE.


Now that the schools have broken up many of you will be off on holiday, some of you will be visiting theme parks. The LHM team are often asked if children or young adults can go on the rides, especially ones that say you shouldn't go on if you have a heart condition. As always it is very important that you ask your cardiac team what their advice for your specific condition might be but for a general overview here follows discussions with cardiologists and surgeons who have raised a couple of reasons why the rides might create an added risk for a child or young adult with only one working heart pump.
*What is Adrenaline – Adrenaline is a hormone produced by the adrenal glands during high stress or exciting situations. This powerful hormone is part of the human body's acute stress response system, also called the "fight or flight" response. It works by stimulating the heart rate, contracting blood vessels, and dilating air passages, all of which work to increase blood flow to the muscles and oxygen to the lungs.

·     The rise in adrenaline* (see below) during a scary ride makes the heart work much harder and can, even in healthy heart children, cause the heart rhythm to fluctuate. Anyone who already has a heart condition will be at a higher risk of developing arrhythmias especially as they get older.

Anyone who has undergone a Fontan procedure and who relies on the redirection of blood to the lungs may find that the rotational rides create a G force that will affect their  circulation, even if it is only for short periods of time. This may leave them breathless and cyanosed (blue).

Doctors are keen to point out that it is up to each family and young person to decide which individual rides may pose a risk but in general the rides which are scary, go upside down or very fast are usually the rides with the greatest cardiac risk.

(Courtesy of Suzie Hutchinson)

Remember... always ask for advice from your cardiologist.
LHM are here throughout the holidays if you need any advice. Call 01214558982.

Wednesday 24 July 2013

Keep updated on Safe and Sustainable via Suzie

On Monday Suzie represented the LHM members at a meeting where the new Standards of Congenital Cardiac Services were being reviewed and brought into line with the newly drafted Adult Standards. 

Although there have been concerns raised about the Safe and Sustainable process every team in the Country agreed that the newly drawn up Standards of Service were an essential way to ensure that every child in the country would have access to a high standard of treatment and care. 

LHM provides one of two user voices within a team of doctors and nurses.  This is a very big piece of work and an essential part of the future services whatever the new reviews final outcome. 

The Standards are not linked to any one unit but set out what any unit will need to provide in the future to offer a gold standard service. LHM’s comments are driven by our members comments on their vision for a future service. Follow the link if you wish to revisit your priorities of care. Safe and Sustainable

If you have any further ideas, concerns or services comments please feel free to email them to the LHM TEAM (info@lhm.org.uk) so that we can include them in further Standards work.


Tuesday 23 July 2013

Your Charity needs YOU!


Did you know next year is Little Hearts Matter's 20th Birthday! Yep, that's right, the team at LHM have been providing services for young people with Single Ventricle Heart Disease since 1994! Back at headquarters we are very excited and are busy coming up with all sorts of exciting things for the Charity to do next year.

WHERE YOU COME IN....

We know you all have lots of time now you are broken up from school so we want you to get your thinking caps on and come up with ways we can CELEBRATE, raise AWARENESS of children and young adults with SVHD and FUNDRAISE - for money much needed for LHM to keep providing you with the services we do already and for new ones in the future.

Email any ideas, little or large, to info@lhm.org.uk - look forward to hearing from you!

Wednesday 17 July 2013

Dissecting an Ox Heart at Our Last Event

You can learn a lot about a regular human heart by looking at the hearts of animals (you can get them at your local butchers if you feel like giving it a go!). Here some of our young members are exploring an Ox heart at our last event!

Tuesday 2 July 2013

Safe and Sustainable

Would you like to be kept updated with the developments over the safe and sustainable plans?

Keep an eye on this link on our website.