Since then we have been lucky. Three years have passed and Samuels health in general has been good. He does need a valve replacement but at present we’re watching and waiting for that time. His heart function isn’t perfect but he copes well with it. Winter and colds present problems but during the summer months he appears completely normal. His heart doesn’t seem to hold him back and he has grown into a very happy and bright little man. My worries about CHD always looming and dominating our lives have gradually faded.
It took me some time to get used to the idea of Samuels CHD and learning to cope with the uncertainty of the future and also the idea of facing major heart surgery. I had a huge amount of anger over his delayed diagnosis. I had felt dismissed and made to feel at fault over his condition. As a nurse I was horrified at myself that I failed to notice my own child was in severe heart failure. I also know that had he arrested at home his chances of survival would have been almost non existent. Samuel’s development is normal and we are fortunate that he appears to have no long term effects of the heart failure and arrest. I found that there was a lack of information on CHD. Despite being the most common birth defect there is such little awareness. I knew nothing of CHD myself. A trip to my local library revealed three shelves dedicated to books on ADHD but not a single book on CHD existed in the entire county. The early days were very lonely with a struggle to get support close to home. Online forums have helped my sanity many times. A positive aspect of CHD is being part of a caring online heart community.
In 2012 in the UK the Children’s Heart Federation launched the ‘Think Heart’ campaign [http://www.chfed.org.uk/home/campaigns/thinkheart/]. This is a simple tool aimed at both parents and professionals to raise awareness of the symptoms of an undiagnosed heart defect. Information, leaflet and posters are being distributed to midwives, health visitors and doctors to help bring attention to the commonest birth defect. Parents are also spreading the word at parent groups, amongst friends and giving out leaflets and posters where possible. I’m very supportive of Think Heart and also the pulse oximetry campaign. I believe both would have made a huge difference to Samuel. He may have been diagnosed earlier preventing an arrest and that uncertain hospital transfer. I may have had the courage to have seek a second opinion earlier rather than question myself and my mental health We would have been saved much trauma and anguish. I’ve learnt since that in the UK there has been a huge emphasis on post natal depression for health visitors. I believe that this was at the detriment to my son – his physical illness was interpreted as my mental health problem. Both pulse ox and Think Heart are really simple concepts that increase awareness of CHD to both professionals and parents. For a very small cost outlay lives can be saved, long term disabilities may be prevented and parents can be saved trauma. In the UK pulse ox is being examined with a strong possibility that it will become a standard part of the newborn examination this year. The professionals are doing their part, as parents it is up to us promote, share and shout about Think Heart and place it higher on everyone’s agenda.