Feel Good Friday

Young Ambassador

In May, Ben and his Mum Louise were guest speakers at a Cardiac Conference in Birmingham. 
They were taking part in an ethics debate where doctors and nurses were learning more about information giving and care planning for children and young adults with complex congenital heart disease.
Both of them used their personal journey to describe the different times when they had felt anxious or stressed and to talk more about how individual care is so important. 
Well done both of you for bringing such an informed and mature voice to the debate.

Ben with his Mum Louise

Ben with Little Hearts Matter Chief Executive, Suzie

Feel Good Friday

Enjoy the long weekend!

Exams

 

We are well and truly in exam season now (although some of you lucky lot have ALREADY finished!) and we wanted to firstly wish you all good luck! Secondly, we wanted to give you some top tips about de-stressing - exams can be (and a lot of times are!) a really stressful time. Nobody likes being stressed out, but when you've got a single ventricle heart condition it's even more important to try and manage your stress levels.

Stress Symptoms

Look out for prolonged or extreme cases of the following if you feel the work's piling up:

• Difficulty getting to sleep or difficulty waking up in the morning
• Constant tiredness
• Forgetfulness
• Unexplained aches and pains
• Poor appetite
• Loss of interest in activities
• Increased anxiety and irritability
• Increased heart rate
• Migraines/headaches
• Blurred vision
• Dizziness

If you've noticed three or more of the above symptoms and you've experienced them for a few weeks you may need to do something about your stress levels.

How to Manage Exam Stress

• Learn to recognise when you're stressing out. A break or a chat with someone who knows the pressure you're under will get things into perspective.
• Avoid comparing your abilities with your mates. Those "Oh my God I've only read Macbeth 17 times" conversations are such a wind up. Everyone approaches revision in different ways, so just make sure you've chosen the method that works best for you. Make a realistic timetable. Stick to it.
• Eat right. Treat yourself like a well honed machine - eat fresh fruit and veg and have a proper breakfasts. Fuel your brain as well as your body - no one can think straight on coffee and chocolate.
• Sleep well. Wind down before bed and don't revise under the duvet - your bed is a sanctuary, not a desk. Get your eight hours.
• Exercise. Nothing de-stresses the mind faster than physical activity, so build it into your timetable. Being a sloth makes our mind sloppy too.
• Quit the bad habits. Cigarettes and alcohol never stopped anyone being stressed for very long.
• Panic is often triggered by hyperventilating (quick, shallow breaths). So if you feel yourself losing it during the exam, sit back for a moment and control your breathing. Deep breath in and out through the nose, counting to five each way.
• Steer clear of any exam 'post-mortem'. It doesn't matter what your mate wrote for Question 3(b), it's too late to go back and change your answers, so it will just make you worry even more.
• Ultimately, don't lose sight of the fact that there is life after exams. Things might seem intense right now, but it won't last forever.

This advice has been taken from the BBC.

Heart Selfie

Some of our young members came up with the idea of doing a "heart selfie" (a selfie with a heart!) to raise awareness during Children's Heart Week last week, and were asking their friends to do the same.

Here's some pictures of people who got involved:

Feel Good Friday - Special Edition!

This Feel Good Friday is a little something different, to mark the fact that we're coming to the end of Children's Heart Week. We've collected some of the wonderful little hearts moments that our young members have shared about their heart journey! Rachel talks about her sister, Sophie, who has Hypoplastic Left Heart Syndrome (HLHS). Evie has HLHS too and talks about her life with the condition, and Carys who also has HLHS has shared some brilliant pictures of her heart journey.

Rachel's Little Hearts Moment

Sophie is my role model. Before she was born, Sophie was diagnosed with a very serious heart problem called Hypoplastic Left Heart Syndrome (what a mouthful!). In short, Sophie has half a heart. 
By the time Sophie went to school, she had completed three stages of open heart surgery. As she got older, she got stronger and today she seems just like everybody else- happy, bubbly and full of energy. 
But having half a heart has its struggles. Sophie is part of the first generation in the UK to survive- parents and families just like ours are faced with a unique set of challenges and an uncertain future.This is where Little Hearts Matter comes in. Little Hearts Matter is a UK run charity, and a gift to families like mine. They offer ongoing support, allow families to access the latest information, and give Sophie the opportunity to meet other children with her condition. Without them, we would be lost. 

Evie's Little Hearts Moment

When I was born, I was very ill and was diagnosed with a life-threatening heart condition called Hypoplastic Left Heart Syndrome. In other words, I only had and still have half a working heart. 
After three lots of open heart surgery before I was four, I began to grow like a normal baby and with the care and support of my brilliant Mum & Dad, I have been able to enjoy most things that children do as they grow up.
However, what has made it more bearable is the support, love and advice that Little Hearts Matter has provided me and my family.
Little Hearts Matter is a UK run charity, small yet perfectly formed, and offers ongoing support to families like my own, holds their hands as their children go through surgery and then begin to thrive, as well as provides all important information to help them make the best decisions. However, more importantly Little Hearts Matter has given me the opportunity to meet and become special friends with people facing the exact same challenges I face. Without them, I'd live in a very lonely place.

Carys's Little Hearts Moment

So, that's a few Little Hearts Moments that some of our young members have shared with us! Make sure to share your story and use #littleheartsmoment!

If you'd like to support Little Hearts Matter, you can donate by texting LHMO14 £2 (or the amount you wish to donate) to 70070.

Remember, half a heart - not half a life.

22 Year Old with HLHS Lives Life to the Full

Woman born with half of a heart lives every day to the fullest, unsure of tomorrow (Article from WCPO)

Doctors told Tri-State parents that their baby girl wouldn't live long because she was born with a heart defect. But 22 years later those doctors stand corrected.

Meghan Roswick lives with half of a heart due to a life-or-death decision her parents made more than two decades ago. "I was born with a congenital heart defect called hypo-plastic left heart syndrome," Roswick said. "Which means I was born with virtually half a heart."

Patty and Rick Roswick, Roswick's mom and dad, consulted the doctor when their daughter was born in danger. "We asked the doctor what he would do and he said honestly if it was his child, he would give her morphine and let her die," Patty Roswick said. The Roswicks found a new doctor who was willing to perform experimental surgery to reroute Meghan's blood circulation. The procedure would force the right side of her heart to do the work of the left. "First surgery I was 11 days old, second surgery at six months, third surgery at 13 months, then heart failure again and had surprise fourth surgery," Meghan Roswick said. 

From that point she began pushing the envelope every chance she got by taking up various sports. "I started gymnastics, and my mom was on the phone with the surgeon, saying, 'Is this good? She's ramming herself into the vault, falling really hard on the bars. Is this OK?'" Meghan Roswick said. "(The) surgeon said, 'Yep, it's fine. That's why we do this.'" Her adventures didn't stop with gymnastics. She's pushed herself to the next level ever since. "It gives me kind of a rush," Meghan Roswick said.

"We made a decision that we weren't going to limit her, nor say, 'Meghan, don't do that,'" Patty Roswick said. Roswick took up skateboarding three weeks ago. She skied over the winter. She has the symbol for adrenaline tattooed* on her neck. "I always just wanted to live, to feel adrenaline pumping through my veins, to prove those doctors wrong," Meghan Roswick said. "Who said I would never have a good quality of life?" Roswick makes each day a new adventure, but she's not in the clear yet. Within the next few days, she is scheduled to undergo tests to see if she needs more surgery. "It's really scary, especially getting older because you don't know," she said. "The oldest people with it (hypo-plastic left heart syndrome) are not much more than 10 years older than me, so sometimes I think to myself, I only have 10 more years."

Most of Meghan Roswick's time goes to things that don't make her worry. "The time we have on this planet is short," she said. "We never know when our time is up and I want to do as much as I can, jampack my life with a bunch of experiences and adventures."

You can keep up to date with what Meghan's doing via her Facebook page.

*There are things for you to consider when you have a single ventricle heart condition if you’re thinking about piercings and tattoos. All tattoos and piercings carry some risk and most cardiologists and health professionals recommend 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. The most important thing to know is that 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.

Remember, the decision to get a piercing or tattoo is yours, and if you choose to proceed, this list will help you make the procedure as safe as possible:

• Visit a reputable place that follows rigorous hygiene guidelines

• Make sure pre-packed sterilised needles are used only once and then thrown away

• Ensure left over ink is thrown away

• If the piercing becomes red and sore, you should remove the ring/stud and seek medical attention

• If you need to remove the ring/stud because of infection, you should not replace it until the infection is completely cleared

Take a Little Hearts Moments with our Thunderclap

As you may know, Children’s Heart Week will be taking place from May 12-18th this year. To celebrate, Little Hearts Matter (and now us!) are asking you to join a Thunderclap and take a #LittleHeartsMoment to raise awareness for children and families affected by single ventricle heart disease. 

We’re asking you to join here by pressing support on Facebook, Twitter or both. That’s all you have to do! Then, on 18th May at 12:00pm a message will be posted from your account saying: 

“I’m taking a #littleheartsmoment for children with only half a heart. Because Little Hearts Matter.http://thndr.it/1f3xxV5”

Simple. And it would be even better if you could then ask your friends to do the same!

Find out more about Thunderclap through Little Hearts Matter's blog here

Feel Good Friday