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 and we will pop one in the post. Our publications are free to our family members, but if you are a professional or non- members there is a small charge for them, click here to download the publications order form.
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 booklet 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.
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.
Living with anticoagulation
This booklet aims to equip parents, children and young adults with an understanding of why anticoagulation medications to slow blood clotting are needed, how to manage it on a day-to-day basis and what the associated risks are.
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.
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.
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.
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.
Transition to secondary school
In this book we will concentrate on the middle years in school and briefly touch upon the transition between Key Stage 2 (Years 3, 4, 5 and 6) and Key Stage 3 (secondary school).
As children develop and age they have to take steps forward in their education. For a majority of the time these steps are small and are made between classes. But from Year 6 to Year 7 or between junior to middle and then secondary school, the changes usually involve movement between classes.
Every school is run differently according to the ethos of the school’s head teacher and board of governors. Many secondary schools specialise in a specific area of education: science, sport or performing arts, for example. Other factors shaping schools are the national curriculum and local policies and educational support services.
This booklet has been created to help children and parents to plan the move into secondary school and to build a partnership between school and family.