I hear all sorts of stories from the Down’s syndrome community that bother me in one way or another. The medical professionals are usually the ones which get me the most annoyed – somehow I think they ought to know better.
When anyone plans for a family, or finds themselves pregnant unexpectedly, we all want the “best” possible outcome. This outcome is not set in stone – at the beginning we want a “perfect, healthy baby”, then when we are faced with some anomalies on a scan we want the best outcome again “please let it be operable” or “please don’t let it be life threatening” (for the purpose of this blog I am not taking in to account people who terminate). Life alters, expectations change, and as human beings we are remarkable in our ability to adapt to change and to conquer adversity – no matter how hard it seems while we are in the thick of it. Most things are transient, and even when we have to deal with grief there is a inherent strength in us which makes us carry on. Some of us take longer or need more support but on the most part we are able to move forward and make the best of our situations. Some people do it with a smile on their faces, others with more tears but we all get there in the end.
Medical professionals bother me greatly because of their assumption that they can predict an outcome for a family based on a diagnosis. Within the Down’s syndrome community it is horribly common for families to be delivered a prenatal or postnatal diagnosis of Down’s syndrome for their child alongside some gloom or negative inference. Mostly prenatal diagnosis follows with the assumption (or worse, suggestion!) that the pregnancy should be terminated. Postnatal diagnosis (that means a diagnosis after the baby is born) is often accompanied with throwaway stereotypes or outdated understanding based on medical literature which, trust me, paints a bleak picture of Down’s syndrome: learning difficulties, speech and language problems, low muscle tone, feeding issues, heart problems, bowel problems… they list EVERYTHING which might (or equally might NOT) occur in our babies.
Sometimes I wish people could read a book about what awful things could happen to a typically chromosomed baby… all the things mentioned in the journals about what a baby with Down’s syndrome *might* have, there are a gazzillion (excuse the word, but it seems appropriate) OTHER things which might happen to a typically chromosomed baby – not least having an unidentifiable genetic syndrome or any one of the other 6000 birth defects that are currently known about. After that, there are childhood illnesses, allergies, accidents and terminal diseases.
What I so wish I could tell new parents is this:
“Congratulations on the birth of your baby!! Enjoy every minute, you are going to adore your child and your baby will grow up to be a unique individual. With your love and support he/she will achieve to the best of their ability. Yes, there is a chance your baby could develop all manner of other illnesses or be diagnosed with something not apparent at birth – but you will have to cross that bridge when you come to it. Your life and the happiness of your child is in your hands. The rest doesn’t matter”
Seren will be 4 next month. We have just been to our first festival of 2014… I wish I could let the medical professionals see this…
I can assure you, NOT ONE medical professional told me how good life would be for her and for us – thank goodness I always knew it would turn out this way!