Discovering that your baby has a complex heart condition can leave expectant parents feeling very frightened and alone even if they are surrounded by caring friends and relatives.

Having an opportunity to read about how other parents travelled similar journeys and learnt to cope with the immense emotion which such diagnosis brings can help with personal decision making and reassure mums and dads that there is a great deal of informed support available to them.

Here we have collected together a number of stories from parents who each chose to travel a different path for their baby. They have each expressed their story with the loving care all parents have for their babies and we are very grateful to them for sharing their story to support other parents as they travel their own personal journey.

If the stories here raise questions, worries or concerns the LHM team are always here for support on 0121 455 8982 or [email protected].

Anna and Matthew’s story

Anna and Matthew explore their decision not to follow a surgical path for their baby. Our “Phoebe Journey” began at the 20 week anomaly scan. The sonographer said she was having difficulties seeing the heart and asked me to take a walk around to get baby to move. I didn’t think twice about it. We’d … Continued

Michael and Louise’s story

Michael and Louise share their feelings about continuing their pregnancy. “What is it like being a ‘heart’ dad? It’s scary.” I have a child with a congenital heart defect which was diagnosed at her 20 week scan. When we went to have the scan, I was looking forward to seeing how our baby had grown … Continued

Rebecca’s story

Rebecca shares her difficult decision to interrupt her pregnancy. I was 25 years old and had a daughter of five, before I had my daughter I had previously experienced terminating my first pregnancy at five months due to a chromosome abnormality, I was only 19 and completely unaware of these devastating situations. After this traumatic … Continued

Amie and Robert’s story

Amie and Robert share their decision to continue with the pregnancy. We had our first holiday in the sun as a family in August 2011; little did we know that whilst we went away a family of three, we were coming back as a soon to be family of four! We were delighted and surprised … Continued

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    Slowly but surely, the days are getting a little longer, brighter and warmer. Makes a huge difference, doesn’t it. This past year, our focus has been, and always will be, to support families on their half a heart journey. When the pandemic is over, we will still be here, helping them through feelings of fear, isolation and lack of understanding – because they are on a life-long journey. So, as we all take baby steps towards normality, we ask the public to carry a new approach with you into the future - simply be mindful of vulnerable groups, always, even after Covid. Cannot wait to see our members getting out and having fun again! ... See MoreSee Less

    10 hours ago  ·  

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    Jump to 2021, our support services have evolved into something special. We now have a wealth of information available to families of all single ventricle heart conditions. This includes our ever-expanding library of publications. We create specialised information, tailor-made for our members as they navigate life with a single ventricle heart. One of the many ways that makes our work so unique. Our latest publication is no different and was designed to support young people with half a heart as they navigate sex & relationships. This guidance is for young people aged 16+ and it is available as a free download here: ... See MoreSee Less

    1 day ago  ·  

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