What we go through every day
Teenager signs a powerful message to other young people with heart conditions
As heart month draws to a close a teenager from Crewe has sent out a powerful message in British Sign Language (BSL) to other young people with heart conditions. Robert Allen gives an expressive and emotional performance signing the words of Fight Song by Rachel Platten. He says the words describe “what we go through every day”. He made the video to raise awareness of heart conditions during heart month.
Robert was born in May 2006 by emergency C section at 35 weeks gestation as ante-natal testing showed that he wasn’t meeting the criteria set out in the ante-natal guidance. After he was born tests showed that he had a large hole in his heart (fenestrated VSD).
In July 2006 Robert had his first heart surgery, he was fitted with pulmonary artery (PA) banding.
This was followed two years later by removal of the banding and reconstructive surgery to the heart.
The following year in 2009 Robert had complete heart block and was fitted with a pacemaker and in 2010 he had the major Fontan operation and fitted with a new dual chamber pacemaker. Concerns over the success of the operation led to a cardiac catheter procedure in 2011 so Robert had surgery for four years in succession.
After a welcome break of six years Robert had a replacement epicardial system in 2016 (meaning another pacemaker replacement).
Profound hearing loss
Robert also has a severe to profound neuro sensory hearing loss and his brother Paul has the same condition, this is caused by a defective gene and the brothers are the eighth generation affected.
A student at The Royal School for the Deaf in Derby (RSDD) with the support of his interpreter Esther, Robert attends Burton and South Derbyshire College where he is doing his Level 1 in Child Care. Robert wants to eventually become an educational assistant at the RSDD.
Like many children that have spent their lives taking medicine and pills Robert went through a rebellious time and refused to take his medication, With guidance from his parents he is now co-operative as he understands that not taking his medication would result in him becoming very ill, going back to hospital and possibly dying.
Taking control and trying new things
Robert does not allow his heart condition to stop him from trying new things, while being aware of his limitations. His interests include reading, video games, watching films, spending time with his family and friends and of course signing songs.
Robert says, “it is me that controls my life, my heart does not control it”. He would like people to watch and share his video “anything to share awareness of CHD”.