‘Another Dad Said That Seeing Isobel…Had Given Them Hope’- Paul on his daughter Isobel

Paul recalls his daughter Isobel’s birth. He and his wife were the calmest couple in the hospital. Another couple in a neighboring cot even told him ‘she has you wrapped around her little finger’. This is certainly true, Paul and Isobel are very close. However, their relationship was so powerful that his wife had to … Continued

‘Im His Dad Not His Doctor’- David on his son Alasdair

Alasdair’s father David writes about his experiences in trying to support his son who has a single ventricle heart condition. After finding out about his son’s heart condition, David reacted in only way a Medical Physicist could. He used his health research skills and found all the medical literature he could about the condition. He … Continued

‘I Can’t Make It (Luke’s Heart) Normal’- Joanne, Martin, Ethan, and Luke Douglas

Luke’s family reflect together on their experiences of having a loved one with a congenital heart condition. After the anomaly scan revealed that Luke would have half a heart among other conditions, Joanne and Martin spent days at home under a dark cloud and in tears.  But they found support in friends, family and Little … Continued

‘We are prepared to spend his first birthday in hospital, and that’s OK’- Laura on her Son Lennox

There can be so much confusion about suddenly being told you’ll have a child with half a heart when you’ve had healthy children in the past. Laura went through this feeling, even asking herself ‘I have two healthy boys, how can Lennox be so poorly’. Lennox had his first surgery at 3 days old. Those … Continued

‘I Thought It Happened To Other People Far Away’- Maia on her son MacFhionnlaigh

Maia is the mother of MacFhionnlaigh, who has Hypoplastic Left Heart syndrome. She writes how Mac entering her and her family’s life has molded them into better people. He has taught them to laugh more, cry more, and to measure life by love and not years. Maia is a Navy mum, meaning that whilst her … Continued

‘We Are So Blessed And Fortunate To Have Vinnie’ – Jessica On Her Son Vinnie

Vinnie and his family’s heart journey started when they were sitting in the maternity ward and Vinnie wouldn’t feed. Matthew, his father immediately arrived at the hospital to support them. Vinnie spent Christmas day alone in an incubator. To find out about Vinnie’s condition, they had to travel to Birmingham Children’s Hospital. When they were … Continued

‘He’s a born miracle’- Kyra On Her Son Kaiden

Kaiden was born with Tricuspid Atresia, Pulmonary Atresia and a large VSD. After Kaiden’s first surgery, his parents were shocked at the many tubes wrapped around their little boy. But that was only the beginning. After Kaiden’s second surgery, his parents found out that he had severe narrowing in one of the veins and had … Continued

‘The Scariest Experience of My Life’- Michelle on her son Elijah

Michelle Rose is the mother of Elijah, a ‘little bean’ with a series of conditions such as Double Inlet Left Ventricle, Transposition of the Arteries, Hypoplastic Right Valve, and Sub Pulmonary stenosis. For parents, the 20 week scan usually confirms the pregnancy is going smoothly, and Michelle naturally expected this. However, she describes the shock … Continued

‘He Had A Chance Of Surviving’ – Jessica on her son Ollie

By the time of her 12 week scan, Jessica had a high chance of giving birth to a child with Down syndrome and/or a heart condition. The words ‘I can only see half the heart beating’ brought her world crashing down as she sobbed into her husband’s arms. Their little boy had Hypoplastic Left Heart … Continued

The Stories My Parents Tell Me About The Whole Experience Scare Me- Thomas Messer

Thomas Messer is a 19 year old musician from Scotland with half a heart, or Hypoplastic Left Heart Syndrome (HLHS). Over the last 19 years Tom has learnt to live with HLHS and all the challenges it has presented to him. His mum, Carole, said: “He copes really well and never complains. Transition has not … Continued

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