Alex is a slim, energetic young man with Down’s syndrome in his early 30’s with no apparent health problems. Alex lives in a supported living house with a couple of friends. He is very sociable and enjoys sport, music and drumming in a band. Alex has a job and a great social life. He has kindly given us permission to share his story with you today.
One morning last January whilst preparing his breakfast Alex suddenly collapsed on the kitchen floor and was out cold for around 12 seconds. Thankfully he was with friends and a support worker at the time and she rang the Doctor.
A decision was made to admit Alex to hospital immediately where he had a couple more of these terrifying episodes. Alex became increasingly distressed as he and his family waited for a diagnosis.
Eventually, doctors narrowed Alex’s symptoms down to possible heart problems. Alex had never had any sign of heart disease and when he was a baby, echocardiograms were not so readily available and certainly not offered routinely to children with Down’s syndrome. It took three days to diagnose that Alex was experiencing intermittent heart block which meant that his heart was actually stopping for up to 12 seconds at a time and then suddenly starting again. This meant that Alex was in great danger of collapse at any time with no warning. These life threatening incidents could have happened anywhere, anytime – at the top of a flight of stairs, in the middle of a busy road or while working with machinery at his job.
Alex’s family were told that his heart defect might well have been present from birth and had only now begun to give him problems. His parents said that looking back there might well have been signs that with hindsight could have been symptomatic of an underlying heart condition.
We’ve been campaigning for better healthcare for nearly 50 years
Many years ago, the DSA campaigned for better healthcare for people with Down’s syndrome. We produced a powerful Report called ‘He’ll Never Join the Army’ which revealed some serious concerns about the healthcare being given to people with Down’s syndrome.
Together with the Down’s Heart Group we gave evidence to an Inquiry into discrimination against children and adults who were being denied life-saving heart surgery. The Inquiry found that there had been discrimination in several hospitals and we worked with the Royal Brompton Hospital to improve services both there and elsewhere.
Sadly, we now have anecdotal evidence that although up to a half of all babies with Down’s syndrome are born with heart defects requiring urgent management, early tests (echocardiograms) are not being carried out routinely everywhere in the UK. This is a scandal and we need to make sure that something is done about it.
We are currently supporting research to discover the extent of the problem.
Supporting our appeal will help to make sure that people with Down’s syndrome are given the healthcare they need throughout their lives so that they have the same life chances as everyone else.
You can donate ONLINE, by calling us on 0333 121 2300 or TEXT DSAC21 £10 to 70070 to make a difference today.
The DSA is working with other Down’s syndrome organisations and medical experts from around the world to develop surveillance and treatment health guidelines for all children and adults with Down’s syndrome.
Our aim is to achieve World Health Organisation recognition for these Guidelines so that Governments cannot ignore them. This is a huge undertaking. Sadly, the necessary work needed to review all the evidence to support this advice has, as yet, not been done. We need to make sure this happens!
Cardiac will be the first of many Guidelines to be completed and our aim is to have our Guidelines accepted as routine practice in the UK.
The funding we need to complete important projects like this comes entirely from supporters like you. A gift from you today would help us play our part in this vital work. We hope you will consider supporting this appeal with a gift of whatever you can afford.
A happy ending for Alex
So what became of Alex? He has been fitted with a pacemaker and his heart blocks have stopped. He has gone back to his house and he is back at work.
Alex was very lucky; others aren’t. That is why we have to make sure that regular heart checks are routinely carried out on all babies with Down’s syndrome and that every person with Down’s syndrome has the best healthcare possible with regular health surveillance.
Thank you for reading this and for any support you are able to give to our work this Christmas.
Wishing you and all your loved ones a very happy Christmas.
(and Alex’s Mum)