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Eurohearts: Emotional Impacts and Effects of Living with a CHD

January 23, 2013

I took part in a workshop exploring the emotional impacts and effects of living with a congenital heart condition. I heard the thoughts, feelings and experiences from everyone in the room – a cross section of an international GUCH community.  It was interesting to hear the similarities and differences in the experiences, and most notably the common theme seemed to be that the highest emotional impact was experienced alongside big, life changing events, such as surgery, pregnancy and transitioning from pediatric to adult care.


During discussions around our individual experiences of transition, most delegates said that theirs had been fairly negative, unsettling and stressful. Some people said this was largely in part because they weren’t being seen by a specialist GUCH cardiologist. If in the right hospital under the right specialist team, this problem should not occur in the UK for we are set up with specialist GUCH cardiologists, precisely to give expert care, information, advice and guidance, for best ongoing care and treatment physically and also emotionally. Some of the experiences reported by some of the delegates during the workshop made it very clear how important such a specialism – and access to it – really is.


It was also felt that the lack of privacy experienced by some people during consultations and physical examinations left them feeling over exposed during that awkward, often embarrassing journey of adolescence. Many wanted their parents present during consultations because they always had been and negotiating a lone relationship with their doctor suddenly felt very intimidating, and staying alone in hospital overnight following surgery or a procedure, rather than being accompanied by family, only added to the stress and anxiety experienced.   This of course is completely understandable – and if this is something that you are worried about, it’s worth chatting to your cardiac liaison nurse or cardiologist. Some hospitals do have the capacity to accommodate a parent if it’s the first time a young adult has been treated as an in-patient, or they may be able to be a bit more flexible with the visiting access.


We all agreed that it would be great if within hospitals, there could be areas of “normalcy” – places with bright walls, fun furniture, games and televisions. This does exist to a certain extent in some hospitals, but not in all – I appreciate that cost and space may be prohibitive, but we did all feel that somewhere like this for each hospital would really give people transitioning a place to go to relax and meet other people going through similar things – to create a more social environment rather than feeling alone.  Give your hospital feedback – let them know if this is something you think would benefit you or the next generation of GUCH patients. They may not be able to accommodate it, but without feedback, enthusiasm and ideas it won’t happen!


Pregnancy and family planning were two other common issues that arose during the workshop – many people admitted these subjects caused particular anxiety and stress.  Some women with a congenital heart condition may need to take different types of contraception, It’s really important that you discuss your contraceptive needs with your cardiologist or cardiac liaison nurse – it may be embarrassing but they’ve had these conversations many times before. It’s the same with thinking about starting a family – some people in the workshop grew up assuming they’d not be able to have children at all, only to be surprised later in life when they realized this was not the case, and that there were possibilities for motherhood, and that they could get the support to have safe, healthy pregnancies. Conversely, and sadly, others said that they’d always assumed they would be able to have children, and they never discussed the issue with their cardiologist, and then were crushed to be advised later in life that pregnancy would be considered a significant risk. The bottom line that came out of this area of discussion was the importance of having an open, honest relationship with your cardiologist – let them know when you start having sex, let them know if you are thinking of having a baby or if you have worries around it. These things are natural and experienced by many GUCH patients growing up, and your cardiologist will be able to give you the most personalized advice and support.


Nowadays, due to advanced surgery and treatment, many patients are able to live long and happy and relatively healthy lives.  Because of this, we are becoming increasingly susceptible to developing other complications and conditions, such as aquired heart disease. The advice in the workshop was very much to enjoy an active, healthy lifestyle with moderate exercise and a sensible diet. GUCH patients are just as vulnerable to  developing ailments of the typically older generations too – so chat with your cardiologist and find out what kind of exercise and eating plan would be best for you and your own individual situation. Whatever your ability or mobility, there’s ways and means to help prepare your body against future conditions that may be completely separate from your heart.


I hope that the common themes on which I’ve reported back from the ECHG conference has been of some interest and help – but of course, everyone has their own journey with their heart condition, and people can experience a whole range of emotions at different times. The Somerville Foundation has a lot of different sources of support, so if you feel like chatting, or getting some further information – please don’t be a stranger. After all, a problem shared is a problem halved!

For more information, advice and support:

The Somerville Foundation Helpline: 0800 854 759 /

Anne Crump, Mental Health Support Worker: 0208 240 1165

A range of downloadable leaflets are available at our website

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