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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    Nominations are open for our next Brave Hearts Awards 🏅

    We know that a lot of our young people miss out on awards and trips at school and we feel that they, like every young person should be rewarded for what they learn and how they develop 🙌

    If you know of a young person with a single ventricle heart aged between 8-17 that has achieved and grown, take a look at our list of awards on 👈

    Nominations will close at the end of January 2020 📅
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    8 hours ago  ·  

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    👋 Meet Archie, he is 7 years old and was born with Tricuspid Atresia (TA) a rare congenital heart condition. Archie had his Fontan procedure in September at the University Hospital Southampton, Ocean Ward. The aim of the Fontan procedure is to give a child as much energy as having only half a pumping heart will allow. If surgery has gone to plan the children will gradually recover from the operation and go on to gain far more energy than they had before. He had a longer stay than anticipated, due to a number of complications, but was discharged in October.

    ❤️ “The staff, nurses, doctors, consultants and surgeon were utterly wonderful and we can’t thank them enough. However, it was a consultant anaesthetist, Dr Andy Curry, who stood out in Archie’s mind. His bedside manner, and the relationship of trust that he managed to build up with our very anxious little boy, was astounding to watch. So, on ‘Dress as your Hero Day’ at school, Archie wanted to dress as his hero…”I want to dress as Dr Andy because he helped save my life and he’s my friend”…gulp” – Archie’s mum Charlene.

    😻 We have been blown away by this story. A month after coming home from hospital and Archie is raising a smile, dressing up as his hero and on his way to school. This is one strong boy, as are all of the children in the LHM family.

    🙌 Give this post a share to show your support of Children’s day.

    University Hospital Southampton NHS Foundation Trust
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    1 day ago  ·  

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