Dear MP,
We received my son Joseph’s diagnosis of Hypo-plastic-left-heart syndrome after his 20 week fetal anomaly scan. For the remainder of the pregnancy, there was an implicit and sometimes explicit pressure to consider aborting him. He was born, and received the most extraordinary level of care from our wonderful NHS – they’ve saved his life a number of times. Now he is the happiest, most joyful cheeky little boy who is thriving and enriches the lives of all around him. However, his condition is palliative and he will never recover. I do not want his future to be tainted by that same implicit and sometimes explicit pressure that perhaps it would be better if he ended his life that we were subjected to before he was born.
Caring For The Vulnerable
I have witnessed death first hand with both the very young and the very old. I know that it can be unpredictable and challenging and have a significant toll on those who witness it. I know the last few weeks, days and hours are intense and physical and challenging. I know that there is a concern about how dignified the dying will feel as the end approaches and I’ve seen this play out in real time with my extremely proud and stubborn grandmother.
I also know that, as with all of life’s most important moments, so much good and beauty can come from the physical and emotional vulnerability that is required in the run-up to death. There is quiet and stillness and the opportunity for closeness and reflection in the waiting. And there is something profoundly moving in the requirement for those around the person who is dying to make sacrifices. I think accompanying someone to the grave is a lot like parenting a tiny baby. It’s hard and it’s messy, but there is beauty in the sacrifice and there’s something so special about being able to give to someone who can’t possibly repay you.
I Am Afraid For Joseph’s Future
As we all know, we are able to give patients medications that make them comfortable, even when they are on the very edge of life. I’ve seen this first hand with my grandmother who was able to have those medications even though she chose to die at home, and I’ve also seen it with my son after surgery in Great Ormond Street’s Cardiac Intensive Care Unit. He was able to be kept comfortable despite having ‘delayed chest closure’ which meant I could see his literal heart beating inside his chest through the see-through dressing.
Assisted dying is unnecessary, dangerous, removes opportunity for beauty and puts the vulnerable at severe risk.
I am afraid for Joseph’s future, and I am begging you to vote against this bill.
Sincerely, your constituent
