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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    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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    👋 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.

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    University Hospital Southampton NHS Foundation Trust
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