‘We Are so Proud Of Everything He Has Faced’- Mary’s Story

‘We can’t see all four chambers of your baby’s heart’ were the hardest words we’ve ever heard. After hearing this devastating news, we were so anxious to know what this all meant, but what with the heart being one of the bodies most vital organs, we knew it wasn’t good. Our local hospital completed an … Continued

‘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

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 Right Heart … Continued

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    If you are booking your summer holiday you might like to look at our Travel and Trips booklet to help with your planning. It is full of tips and ideas for how you can make sure you have a great time but also keep your heart warrior safe. www.lhm.org.uk/information/lifestyle-information/travel-and-trips/ ... See MoreSee Less

    18 hours ago  ·  

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    Children with half a working heart catch colds and coughs just like other children of the same age but of course when you already have a reduced energy level and less oxygen travelling around your body it can knock the children for six. Parents may notice that their child is a bit more cyanosed, a bit bluer, and that they may be a bit more breathless than normal. Keep the children well wrapped up and snug and warm, give them Calpol if their temperature is high, keep the fluids going, small amounts of nourishing food every couple of hours and lots of opportunity to sleep will all help a child recover. HOWEVER, if they have a high temperature for a couple of days or their breathlessness or colour becomes worse take them to the GP for a check-up. If the infection is Viral there will be no point in antibiotics but if the GP thinks antibiotics will help they will be prescribed. If you are worried at all always get your child checked by a doctor. ... See MoreSee Less

    2 days ago  ·  

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