The Little Hearts Matter support line is open from 9am to 10pm seven days a week. The team work to offer support at the time of a new diagnosis, through decision making and treatments and then during life at home. No question is too small, we will always try to help where we can. 0121 455 8982.

Office support team

When a call comes in to the office it will first be answered by Tina or Paula. They will take some initial details and then chat through what support or information the caller is seeking. They will then either refer the caller on to another member of the team or send out appropriate information.

Many calls are referred on to Suzie.

Suzie has been working for the charity for 17 years. She used to be a Congenital Cardiac Specialist Nurse so will listen to all callers’ concerns and work to help them understand what their medical team have told them, especially following a new diagnosis or treatment plan. Although she is unable to give individual medical advice she will help a caller to draw up a list of questions for their own medical team. She also works to help families access support for a child in school or when they apply for benefits. Her aim is to give a general overview of life with a congenital heart condition and the support a child or family may need at any stage of their journey.

Parent-to-parent volunteer team

The support line is manned by a team of trained supporters in the evenings and at weekends. All parents of children with a single ventricle heart, the team are brilliant at offering support when a caller most needs it.

Claire Goodenough, Support Line Volunteer

Claire has been an LHM support line volunteer since the service started 12 years ago. She is married to Dave and lives with him in Warwickshire with their two children, Will aged 22 and Mary 18. Will was one of the pioneer children undergoing surgery for HLHS in Birmingham when he was first born. Clare brings her experience of being the Mum to a young adult with a single ventricle heart as well as a lifetime of experience throughout his childhood.

Jen Evans, Support Line Volunteer

Hi my names Jen, I’m married to Phil and have 3 gorgeous children.

Charlie 8, Sophie 6 and Alfie 3. Sophie has HLHS, I volunteer on the help line as I wanted to give something back and to listen to those who are going through similar experiences to me and help if I can. 

Rachel Robinson, Support Line Volunteer

I have been married to Adrian for 15 years, we have 4 children and live and work on our family farm in South Shropshire. I had an antenatal diagnosis of HLHS with my 3rd child, Samuel, who was born in 2006 at the Birmingham Women’s Hospital. Samuel has undergone all three stages of surgery at Birmingham Children’s Hospital and has since had a pacemaker. I have done some fundraising for LHM over the last few years and 3 years ago I became a parent support volunteer. I clearly remember how desperate and confused we were by the initial diagnosis and what a lifeline LHM was to me. LHM has continued to support us over the years and I am glad to be able to support other mums and dads who find themselves in a similar position to the one we were in 10 years ago.

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    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

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    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  ·  

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