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Heart Sisters take on the Swim 60 Challenge to raise funds for BHF

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Imagine being told your unborn child will need multiple open heart surgeries to have a chance at life.  

That was the brutal scenario Victoria and Simon faced after a specialist informed them their first child would be born with a congenital heart defect.  

Heart defects are diagnosed in at least one in 150 births in this country – that's an average of 16 babies each month in Wales – with more diagnoses later in life.   Unfortunately, Olivia, 14, was diagnosed with a complex congenital heart defect that caused problems with one of the chambers and major vessels of her heart.

It would require numerous surgeries, and a specialised procedure called a Fontan procedure to repair the defect and improve the function of her heart. At just seven days old, Olivia underwent her first open heart surgery operation.  

The multiple surgeries and stages of a Fontan Procedure are designed to increase the deoxygenated blood flow to the lungs and separate the oxygenated and deoxygenated blood supply. The final stage diverts the deoxygenated away from the heart and straight into the lungs which allows the heart to use one working pump to circulate the oxygenated blood around the body.  

Thankfully the operation was a success, but that was just the first hurdle she would have to overcome. Several more operations followed and two further open heart surgeries at 18 months and four years old.  

These operations have provided Olivia, or Livvy to friends and family, with the opportunity to live her life, albeit with more complications and less energy to other children. After the family took advice on how she could exercise safely, she keeps as active as she can to protect her heart to try to prolong its ability to operate in this way, and says swimming has played a key role in her journey.  

Olivia said: “Swimming is a great sport and is fun. I cannot take part in many sports especially contact sports because of my medication, but I know it is important for me to stay as fit and healthy as possible.”   

Olivia’s care has all had to be conducted over an hour away from her family home by her specialist paediatric cardiac teams in Cardiff and Bristol. The distance between the two centres is 60km, so this is the challenge the family are aiming to complete in the pool.   Livvy will also be joined for the challenge by her mum Victoria and sister Amelia, 10, who also has a congenital heart defect.  

Amelia who has a condition called bicuspid aortic valve, which to date has only required monitoring by the team in Cardiff. Amelia has recently joined her local swimming club, Abergavenny ASC and this will help the team gain some valuable metres.  

Mum Victoria said: “I am incredibly proud of the commitment the girls have shown to this challenge already. We are so grateful to the British Heart Foundation for the medical research it funds. The prognosis for children like ours has changed significantly even since Livvy’s diagnosis.”  

Nikki James, Area Fundraising Manager for the BHF in Wales said, “We are grateful to the Waters family, and everyone who takes part in Swim Wales’ brilliant Swim 60 Challenge. Before the BHF existed, the majority of babies diagnosed with a severe heart defect in the UK did not survive to their first birthday. Today, thanks to research, more than 8 out of 10 survive to adulthood.”  

Adam Fletcher, Head of BHF Cymru said, “The health benefits of swimming are well recognised. Swimming is one of the few activities that work your whole body. Breaststroke, backstroke, front crawl, butterfly and even doggy paddle get your legs and arms moving. This in turn works your back and core muscles. Regular exercise is important for everyone to maintain their health and swimming can be an enjoyable rehabilitation activity for people with heart conditions, following advice from their medical team. BHF Cymru is proud to partner with Swim Wales on this fantastic event which will help us fund lifesaving research into heart and circulatory diseases.”  

The family are indebted to many charities that have helped them get to this point such as Little Hearts Matter, who support families with single Ventricle Heart Conditions, Heartline, who provided Livvy’s first wetsuit to allow her to keep warm in her first swimming sessions and Ronald McDonald House, who provided accommodation close to the Hospital, whilst Olivia received her operations and recovered in hospital.  

Their challenge hasn’t gone smoothly so far requiring isolation, pool closures and a number of other false starts. The team have currently completed half the distance and will work hard over the next few weeks to aim and complete this on Olivia’s Heart Day – 14th March – which marks her 15-year diagnosis and 10-year Fontan completion surgery anniversary.  

You can donate to their JustGiving page by clicking here.  

If you would like to create your own Swim 60 Challenge to raise vital funds for BHF’s life-saving research, sign up here: https://www.swimwales.org/pages/swim-60-challenge-1   For support and information about congenital heart disease go to www.bhf.org.uk/informationsupport/conditions/understanding-your-congenital-heart-condition email hearthelpline@bhf.org.uk or call the BHF Heart Helpline on 0300 330 3311 To find out about the BHF’s research into congenital heart disease go to www.bhf.org.uk/what-we-do/our-research/heart-conditions-research/congenital-heart-disease-research