Cardiac MRI Scans

Many children and young adults now undergo MRI scanning as one of their cardiac tests. At our Open Day on Saturday Simon McGuirk, a Radiologist, showed us a film that the Birmingham Children's Hospital team have created to explain a bit more about the test so that children and young people will worry less when they have their MRI appointment.

If you are looking for more information about going into hospital or an outpatient test visit your hospitals website, they may have films that will help you and your children prepare for your next visit.

Feel Good Friday

Mother's Day

Add a Little Heart to your profile picture and let your friends know you're proud to know, love or be a #heartmum caring for a child with half a heart this Mother's Day. Follow the link and press "Add to Facebook/Twitter" and join us to say THANK YOU to all the LHM #heartmums working so hard to care for their children this Mother's Day. http://twibbon.com/support/heartmum

Some Musings from Andrew...

One of our young members, Andrew has written this blog piece about the Open Day on Saturday, living with half a heart, and why you should smile if you have half a heart :) Oh, and something about guinea pigs...

Hey everyone! I'm Andrew and I have Hypoplastic Left Heart Syndrome (HLHS). It was lovely seeing lots of you at the Open Day and I'm sure you’ll agree that it was a great day! :)

I'm a people watcher. I'm not a massively sociable person. I’d happily have a conversation with someone, but also, I’d be just as content sitting in the corner in my own little world (Yay for being introverted!). And as I was sitting in the corner, watching on on the morning’s happenings I just loved how everyone was smiling and happy! I'm sure if you put 50 young people who didn't have heart conditions in a room together they wouldn't be as outgoing and chatty as we all were on Saturday, but because we have this common ‘thing’ that unites us, I feel like we’re all great friends without knowing much about the other person! I guess it just made me happy! :’) (cue emotional music...).

As much as Little Hearts Matter being around for 20 years is a long time and an amazing achievement, in the grand scheme of things, 20 years isn't that long. The surgery that many of us went through when we were born is still relatively new, so as I stand here, an 18 year old guy, I feel really old! When I was born, Dr Norwood, who came up with the Norwood procedure, (aptly named...) came over to the UK to perform the surgery on me and teach the medical team in London how to do the surgery, so I think I was the second survivor of HLHS from London because of Dr Norwood. That is a weird thought. What also is weird, is that I've never met Dr Norwood since, so I've never been able to meet, let alone say thank you (and give a big hug) to the guy who saved my life... But I guess that’s why doctors and nurses do an incredibly amazing, fantastic job. They save the lives of regular people like you and me everyday and don’t always get the recognition that they deserve.

I'm going to be honest and say that there are times when I go “man, having half a heart really sucks!” Being the one that’s left out at school, or not being able to go somewhere because I'm too tired or whatever it may be, I can’t deny that fact that there are times when I just wish I had a whole heart! There are also times when the thought about having half a heart really excites me! The relatively new surgery that we went through when we were born has now been perfected on us and is a fairly routine procedure in specialist cardiology centres and is saving lives daily! Because of you and what you've been through, lives are being saved! You are amazing! It’s not just the doctors and the nurses that are the unsung heroes. Because of what you've bravely been through all of your life, children now have the chance of life!! That’s the exciting bit!!  We are ground-breakers, not guinea pigs! You are special, unique and the best version of you that there will ever be, so don’t let anyone tell you that you’re not good enough!!

If that’s not a reason to smile, then nothing is! I'm sure that every smile at the open day brought hope to a family who are just about to go through what we've already come through. So when the going gets tough, just remember that what you've been through and whatever you go through in the rest of your life, is giving another child the chance to live.


Phew! That was deep and meaningful! So to lighten the mood, here’s a picture of a dancing kung-fu* guinea pig. Adios.

*Andrew emailed a dancing guinea pig... But Youth Leader Laura has a stupid laptop that didn't want to show the image and she couldn't find a dancing one but she did manage to find a kung-fu one so...

Open Day 2014

So on Saturday we had our (biggest ever) Open Day over at Aston Villa football ground. It was also our 20th anniversary! It was a brilliant day, with our young members doing lots of workshops, playing games, and making new friends. We even had ITV there!
If you were there and were with us in the youth workshops, please get in touch with me (Laura!) with what you thought of the day so that we can put it here on our blog :)

We did have a great day, the Little Hearts Matter team were pretty tired by the end of the day though! Here's a picture of all of us (sadly minus Suzie!) - I'm the one in the fetching green polo shirt.

Feel Good Friday

Feel Good Friday

Watch: 21 Animals Whose Failure to Jump Correctly Will Make You Sad (and Also Laugh)

Merseyside Mum Wants Law Changed So Newborns Are Screened for Congenital Heart Defects

Vicky Hughes & daughter Ava aged 18 months old,who was born with half a heart

A Merseyside mum wants to see the law change so that all newborns are tested for congenital heart defects. Vicky Hughes’ 18-month-old daughter, Ava, was born with only half a working heart. Fortunately, the problem was detected during a 20-week pregnancy scan and Ava subsequently had life-saving surgery.

But Vicky and others affected by Congenital Heart Defects (CHD) want the government to make it law that all babies are given a “pulse oximeter” test which would help those whose heart problems are not seen during pregnancy. Pulse oximeters are non- invasive medical devices that check the level of oxygen in a patient’s bloodstream and sounds an alarm as soon as it detects the slightest unsafe change.

For the full story, click here.

What do you think? Are pulse oximeters something the NHS should provide?

Man Survives 25 Years with a Donor Heart

A man over in America has become one of the longest-surviving heart transplant recipients on record - in fact, he's lived as long with a donor heart as he had with his own. In reality, however, the new heart became his own the moment surgeons transplanted it inside his chest 25 years ago.

When Thomas Cook, 50, (probably not the same guy as the travel agent) arrived at the hospital for his annual check-up, the physicians, nurses and other staff involved in his care, as well as the mother of his heart donor, surprised him with 25 red heart-shaped balloons, a heart-shaped cake, plates of heart-shaped sugar cookies, and a heart made of crystal engraved with "25 years strong."

Want to read the amazing full story? Check it out here.

Feel Good Friday

Something a little different this Friday, a WHOLE GALLERY of wet cats. Yes you read that right. Click here to get some laughs. Here's a taste of what's to come...

Untold Stories

Meet several young children born with single ventricle heart disease, and their families and find out how they live with this condition.

Lifestyle Issues: Piercings and Tattoos

All tattoos and piercing carry some risk and most cardiologists and health professionals recommend that you avoid tattoos and piercing altogether. Any procedure which breaks the skin carries a risk of introducing bugs into the blood stream. These bugs can settle on the heart causing endocarditis.

Piercing which involves the nose, lip, tongue, genitalia or navel (belly button) carries more risk than piercing of ears, eyebrows or nipples.

However, the decision to get a piercing or tattoo is yours, and if you choose to proceed, what follows will help you to make the procedure as safe as possible:
1. Visit a reputable place that follows rigorous hygiene guidelines
2. Good hygiene is vital. Keep the area clean with a skin disinfectant containing alcohol or chlorhexidine before and after the procedure, until the wound is healed.
3. Make sure pre-packed sterilised needles are used only once and then thrown away
4. Ensure left over ink is thrown away
5. If the piercing becomes red and sore, you should remove the ring/stud and seek medical attention
6. If you need to remove the ring/stud because of infection, you should not replace it until the infection is completely cleared

Information taken from The Somerville Foundation