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

Be social with us - our latest tweets and posts

    LHM Brave Heart Awards! Empowering young people living with half a working heart today.

    Maybe you know an LHM youth member who has achieved something great or has shown a real understanding of their heart condition? Let’s give them some recognition with a Brave Heart Award!

    You can nominate a young person with half a heart for a Brave Heart Award by going to our website here:
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    13 minutes ago  ·  

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    We are kicking off the week with some feel-good…

    “Tommy is absolutely smashing reception! He struggled to settle into nursery, but he started reception on the 3rd and absolutely loves it. He got a “star of the week” certificate on his first full week and he doesn’t want to come home on an afternoon! Tommy is doing 5 full days and is pre-Fontan, so I was expecting him to struggle, but he’s not ❤”

    Fantastic news sent in by LHM member Beth, mum to Tommy who was born with half a heart. So pleased he is settling in well.

    Parents, remember we have a new teachers pack created to help schools understand the needs of a child with a single ventricle heart. You can find it here: or email [email protected] to request a hard copy.
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    1 day ago  ·  

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