Showing posts with label hypoplastic left heart. Show all posts
Showing posts with label hypoplastic left heart. Show all posts

Monday, 29 September 2014

My Handmade Heart

As part of our Handmade Hearts series, LHM's young members talk about life with half a heart. To learn more about Handmade Hearts, click here.

Dillon (10, HLHS) talks about his journey with half a heart, and what he'd like to do when he grows up. 
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"I sometimes get very frustrated with my heart condition, especially when it stops me doing things and it makes me tired. I get annoyed with having to have blood tests and people asking about my scars. But mostly I’m OK with having a special heart.
When I grow up as a job I would either like to be a Ski Instructor – because I enjoy Skiing and I’m really good at it, or a designer for Lego so I can invent new Lego sets and spend my days building Lego. I would also like to be an actor and would love to star in a Star Wars movie."

Click here to read it in full.

You can help LHM to continue supporting children and young adults with half a heart this October by making your very own #handmadehearts. For more info on how to get involved click here. Make, Bake, Sew and Sell for children with Handmade Hearts. To donate to LHM please text MADE14 followed by a £ and the amount to 70070.

Friday, 12 September 2014

Feel Good Friday

A special Feel Good Friday today as one of our young members, Andrew (18, HLHS) has written a brilliant blog post for LHM about what it's like having half a heart. (As part of our Handmade Hearts series, LHM’s young members talk about life with half a heart. To learn more about Handmade Hearts, click here.)
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"If there’s one thing that frustrates me about having a handmade heart, above the tiredness, above the fact that I can’t keep up in sports and above all the guinea pig stuff, is when I look at people who have a regular heart and I see them wasting their life away. Life is so short, and whether you have a handmade heart or not, live your life! Don’t waste your time worrying about what people may think or say about you, because every second spent worrying, is time that you can never get back."
Click here to read it in full.

Monday, 23 June 2014

Ella's Story

At 9 years old, Ella has already had three rounds of open heart surgery.
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.

Monday, 2 June 2014

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
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: -