Feel Good Friday

Ella's Story

The proud mum of a nine-year-old girl born with only half a heart has spoken of her daughter’s bravery in the face of three major operations Dawn Woodcock and her family have already seen ‘little smiler’ Ella overcome three heart operations after being born with a rare cardiac condition.

Mrs Woodcock was told at Ella’s 20-week scan, half-way into her pregnancy, that her unborn daughter had hypoplastic left heart syndrome – or only half a heart. She had her first life-saving open-heart surgery at London’s Great Ormond Street Children’s Hospital at six days old, a second at six months and a third aged four. In the long-term she could even face the prospect of a heart transplant.

Until then, 46-year-old Mrs Woodcock, her RAF logistics sergeant husband Martin and Ella’s 16-year-old sister Chloe mark every day as a triumph. And they have agreed to tell their story to mark Children’s Heart Week, a national awareness campaign for children with congenital heart disease. It is being backed by the Birmingham-based Little Hearts Matter charity, celebrating 20 years since its launch.

Ella – one of only 200 children a year diagnosed with hypoplastic left heart syndrome in the UK – attends the Horncastle St Lawrence Special School for children with moderate learning difficulties. Her proud mum said: “We take every day as it comes, one at a time, because we simply don’t know whatthe future holds. The family adapts to exactly how Ella’s feeling because, with only half a heart, she gets very tired very quickly. But she’s a very happy child and has smiled through everything, even at the nurses straight after surgery. We know there isn’t a cure, but she’s someone who adapts to her needs and just comes out smiling. Ella may require a heart transplant, but that’s in the long-term. The school is fantastic and we can’t say enough about Little Hearts Matter because, through them, we’ve also met some very close friends.”

Little Hearts Matters’ chief executive Suzie Hutchinson said: “Twenty years ago children with complex single ventricle heart conditions could only be offered experimental surgery to give them a chance of life. This charity evolved at that time because of the stress, fear and lack of understanding such complex diagnosis created. Parents handed their precious children over to surgeons not knowing if they would survive the treatment. We are taking the opportunity of Children’s Heart Week to celebrate the amazing children and families. Thanks to improvements in surgery, they now have a greater chance of survival. We hope to highlight the challenges they face every day as they learn how to balance living within the disability that having only half a working heart creates. Little Hearts Matter works to support, inform and empower children, young people and their families as they learn to cope with the roller-coaster life that comes when you live with only half a heart. Many will face a heart transplant as they move into their adult life. However, today, there are young people in their late ‘teens and early adulthood thanks to the innovative surgery that has been developed over the last 20 years.

Story taken from Lincolnshire Echo.

Feel Good Friday

Hannah's Story

Hannah is one of our youth council members, as well as the first young trustee member with a heart condition for Little Hearts Matter. Here's a bit of her story:

When I was born, actually about 6 hours after, I was diagnosed with having Half a Heart. There is a list as long as your arm but I won't bore you.This is me at 15 months old, just after my first major open heart surgery. 

 

I was lucky that my array of conditions balanced my condition out for a lot longer than most children born with Half A Heart. But it was a very trying time for my mum and dad, and I'm really not sure how they got through the first few months to be honest. This is me at my second op when I was 9.

When we became members of Little Hearts Matter, everything became a lot more bearable and for the first time I met kids with the same condition as me and mum and dad could speak to parents with similar problems.

This charity has basically helped me become who I am today, yet many people are still not aware of Congenital Heart Disease and the life time effects.

Half a Heart, Not Half a Life!!!!

LHM Spring 2014 Newsletter

Little Hearts Matters's spring 2014 newsletter is now available here! It features an article explaining what an MRI scan involves, advice on the dreaded DLA, an article on Education and what schools need to know, family stories and lots more. Make sure to head to page 19 for the Youth News!

Feel Good Friday

Your Questions Answered

We get a lot of questions here at Little Hearts Matter HQ, and we thought it would be good for us to share our answers to them. Please remember that all our answers are general, and that you should always talk to your doctor because they know about your specific heart condition.

Question: If I stay up late is there a certain time I should be in bed? Also when I have sleepovers everyone stays up really late e.g. midnight - Can I do this?

Answer: Sleep is very, very important if you only have half a heart because it gives your body a chance to rest but it also gives it a chance to fill up on oxygen in each cell so that you have a reasonable amount of energy the next day.If you have a heart condition and don't have enough sleep you run on empty which is not much fun. It is a good idea to have 9 or 10  hours sleep a night. If you choose to go on a sleepover, half-terms and holidays are best so you have time to catch up on sleep. It is all about balance - tough I know but you want to get the most out of everyday.

Supporting Pupils at School with Medical Conditions

The Department of Education has developed new guidance on how to support children with long term medical conditions in school. 
This is a big piece of work that has been supported by the Medical Conditions in Schools Alliance, a collection of some twenty charities that are all concerned with how children are looked after in school. 
Little Hearts Matter is part of the alliance and is delighted that new guidance has taken major steps forward to put children’s medical needs firmly within their education plan. 
We hope that it will help parents as they work to raise the needs of their children with teachers and local education authorities. To read the new guidance click here.

Feel Good Friday

We Got Mail!

So I (Laura) always love to get mail (messages, pictures, jokes... anything!) from the young members of Little Hearts Matter because it really brightens up my day :) I always put a little note in the youth newsletter to ask people to get in touch because I love hearing from them. After the most recent newsletter came out, I had a great message and photo from one of our young members called Mia. This is what she had to say:

Hi, Laura! My name is Mia, and I have just got the LHM newsletter today, and I decided to write to you........and I can't ride a bike either!
Anyway, I was just writing to you about my Operation. I am the only person in my school who has half a heart, but my best friend understands me though. I am really lucky that I am still alive!!!! So thank you and everyone at LHM for Everything.
From,
Mia :-)  ♥

Those cupcakes look delicious! I wonder if I'll ever get cupcakes sent to me...

Hypoplastic Left Heart Syndrome

What is Hypoplastic Left Heart Syndrom (HLHS)? This 3D medical animation explains more about the condition, as well as information taken from the Little Hearts Matter website.

Hypoplastic Left Heart Syndrome is a congenital heart condition (a problem that a baby is born with). It is made up of a collection of problems on the left side of the heart. Usually, the pumping chamber (Left Ventricle) is small (Hypoplastic) and the Mitral and/or the Aortic valve may be narrow, blocked or not formed at all. The body artery (Aorta) is often small (Hypoplastic) and there is a hole (Atrial Septal Defect) between the two collecting chambers.

The blood’s journey through the heart is very different from normal. The blue (deoxygenated) blood flows into the right collecting chamber (Right Atrium), through the valve (Tricuspid) into the right pumping chamber (Right Ventricle). From there it is pumped up to the lungs where the blood receives oxygen. The red oxygen-filled blood then flows from the lungs into the collecting chamber (Left Atrium) in the left side of the heart, but it will be unable to then pass into the left pumping chamber (Left Ventricle). As the valve will be blocked, it therefore passes through the hole between the two collecting chambers into the right side, where it mixes with the blue blood and follows the normal path to the lungs.

Whilst the Ductus Arteriosus is still open (patent), the blood will pass from the lung artery into the body artery and then around the body. When the duct closes, the baby will no longer have oxygen flowing to their body. Gradually they become sicker and die.

Hypoplastic Left Heart Syndrome is a fairly rare problem that occurs in approximately 1 in 5000 babies and accounts for 1% of all congenital heart disorders.

Follow the links below for possible treatments for this condition: -

1. Possible Treatments For Single Ventricle Conditions 
2. The Norwood Procedure 
3. Modified Norwood Procedure (Japanese Norwood) 
4. Cavo Pulmonary Connection (Stage Two) 
5. The Fontan Procedure (Stage Three)