Most of the information you have seen in the sections above is available in printed or downloadable form.

Click on any publication you are interested in to access a PDF version or ring the office team. Publications are free for members, and LHM will put one in the post.

If at any time you would like to chat through the information you have been given, do not hesitate in giving the LHM team a ring on 0121 455 8982.

Antenatal information pack

Our antenatal information pack has been written for expectant parents who have received a diagnosis of a single ventricle heart condition during a routine pregnancy scan.

This booklet explores the tests that will be offered to help confirm the diagnosis, the treatment options that will be offered during the pregnancy and the management of the pregnancy. It then discusses the treatment options for the baby at birth and the lifestyle challenges faced by children with half a working heart.

This booklet has been written in partnership with Obstetric and Cardiac teams as well as families who have experienced this type of diagnosis.


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Antenatal diagnosis – questions to ask

This booklet contains some ideas of what to ask the next time you visit the hospital. Questions are divided into the following topics: About The Diagnosis, Treatment Choices, The Future, Delivering The Baby and The Plan For The Baby.

It is part of our antenatal pack.

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Antenatal diagnosis – practical tips for expectant parents

This leaflet contains some practical hints and tips for parents expecting a baby with a single ventricle heart condition.

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Living with anticoagulation

This booklet aims to equip parents and children with an understanding of why anticoagulation is needed, how to manage it on a day-to-day basis and what the associated risks are.

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Benefits – a guide for parents

There can be many extra expenses involved when you are looking after a child with a single ventricle heart condition, for example, with feeding, warm clothes for winter and frequent hospital visits.

We hope this guide will help to point you in the right direction of some of the sources of funding which may be available to help families.

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Disability Living Allowance – a guide

Disability Living Allowance (DLA) is a grant that may be paid every four weeks, on application, by the Department for Work and Pensions (DWP) to help families achieve the extra care that children with complex heart conditions require.

In this booklet we hope to offer help to all those who have to complete the complex forms involved when applying for DLA. It is important to remember that each child is different and the suggestions given here are only general rules and ideas. The booklet accompanies the baby and child sample forms which you can find along with further information about DLA.

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Baby sample DLA Form

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Child sample DLA Form

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Early years foundation stage (EYFS) and Key Stage 1

This pack is part of a series helping children with single ventricle heart conditions to make the most of their education, and covers Early years foundation stage and Key Stage 1. Much of the information is also applicable to pre-school and childcare settings.

The key aims of this pack are to make parents aware of what to do and when, what to expect / what to request, and to give them the tools and confidence to ensure their child is appropriately supported. In a recent membership questionnaire, one member commented “because the children look fine, they think you’re a paranoid mother”, – we hope this pack will help families to overcome this kind of reaction by explaining the help our children may need.

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Key Stage 2 – Junior school

Going to school is such an important part of every child’s life. The education gained during all the stages of school provides stepping stones to their eventual independence.

Ensuring that each child fulfils their personal potential takes thoughtful preparation by parents, guardians and teachers. If the child has a complex heart problem a great deal of research and planning is needed.

This booklet has been developed as one in a series of resources to help families positively face the challenges that single ventricle heart disease creates for children in school.

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Be social with us - our latest tweets and posts

    Every child with a single ventricle heart condition should have a Health Care Plan in place in school. It is a statutory requirement. The plan sets out all the ways to monitor and respond to your individual children’s needs. Health Care Plan, HCP’s, can be put in place from the age of 0 to 24 years old. Each Local education authority will have their own plan but they will all cover the same information. For more information on what to include in the plan follow the link ... See MoreSee Less

    1 day ago  ·  

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    Stuck for a Mothering Sunday present? Lucy Houle is giving 10 per cent of all sales of this gorgeous Cobblestone with Hot Pink Handles Medium Tote Bag to Little Hearts Matter!
    Lucy has made this commitment due to her close friendship with Fiona Pollard and Lucia. Lucy explained,

    "I think Fiona and Lucia Pollard are a rather special Mummy and Daughter team.
    Lucia was born with a rare defect that means she has half a heart and the condition is life limiting and can't be cured. At only 5 years old she's already had several open heart surgery procedures to improve her health.
    I often see them in the playground and at ballet where Lucia is every bit the typical little girl but her smiles hide the very real day-to-day struggles that the family face. Thankfully, they get brilliant support from Little Hearts Matter; the only UK charity that supports this rare condition.
    And we want to support them too, so 10% of each sale of our new bags will go to Little Hearts Matter to help them continue to support children like Lucia."
    ... See MoreSee Less

    2 days ago  ·  

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