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.

 

Download PDF

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.

Download PDF

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.

Download PDF

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.

Download PDF

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.

Download PDF

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.

Download PDF

Baby sample DLA Form

Download PDF

Child sample DLA Form

Download PDF

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.

Download PDF

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.

Download PDF

Be social with us - our latest tweets and posts

    If you are booking your summer holiday you might like to look at our Travel and Trips booklet to help with your planning. It is full of tips and ideas for how you can make sure you have a great time but also keep your heart warrior safe. www.lhm.org.uk/information/lifestyle-information/travel-and-trips/ ... See MoreSee Less

    18 hours ago  ·  

    View on Facebook

    Children with half a working heart catch colds and coughs just like other children of the same age but of course when you already have a reduced energy level and less oxygen travelling around your body it can knock the children for six. Parents may notice that their child is a bit more cyanosed, a bit bluer, and that they may be a bit more breathless than normal. Keep the children well wrapped up and snug and warm, give them Calpol if their temperature is high, keep the fluids going, small amounts of nourishing food every couple of hours and lots of opportunity to sleep will all help a child recover. HOWEVER, if they have a high temperature for a couple of days or their breathlessness or colour becomes worse take them to the GP for a check-up. If the infection is Viral there will be no point in antibiotics but if the GP thinks antibiotics will help they will be prescribed. If you are worried at all always get your child checked by a doctor. ... See MoreSee Less

    2 days ago  ·  

    View on Facebook