CONTINUING OUR SERIES ON PALLIATIVE CARE AND INTELLECTUAL DISABILITIES
A mother is told bluntly that her 12-day-old baby is ‘intellectually zero’. Today, our guest writer, Maria Heaton, shares her personal experience as a mother who cared for her own two children with a life-limiting illness and intellectual disability.
I am the mother of three children, and a registered nurse. Sadly, two of my children were born with the life-limiting illness, Lissencephaly. Tristan was born on the 20th September 1996, and at 12 days of age he had a very subtle seizure. That very day his diagnosis was revealed to us in a very blunt manner. We were told that Tristan would never walk or talk; that he was likely to be blind, deaf and ‘intellectually zero’. The information was overwhelming. I recall asking what ‘intellectually zero’ meant and we were told that Tristan would never recognise that I was his mother or that my husband Fabian was his father. This news was so devastating that I could not even take in that they had also told me he would die within the month, but this was a prediction that turned out to be incorrect.
For 12 days, Fabian and I thought that we had a normal healthy boy. Within hours our beautiful boy was described to us like a ‘log of wood’. In the conversation with Tristan’s health team there was not even a speck of hope for us to hold onto. I remember feeling like an atomic bomb had just destroyed my family, my life and my world.
Intellectual ability in children with Lissencephaly ranges from severe disability to normal. Both my children were non-verbal and, due to extreme muscle weakness, they were unable to sign or use an augmented communication device. Tiarna could communicate with her large, beautiful eyes, some vocal sounds, and her gorgeous, expressive face. Between the ages of four and eleven, Tristan could lift his hand or give us ‘a thumbs up’ for ‘Yes’ and shake his head for ‘No’. With the passage of time as his weakness increased, Tristan indicated ‘Yes’ with a smile and closed his eyes for ‘No’.
Both of my children died at home and I was at both of their bedsides but the support I received was very different. In my career as a nurse I have been at the bedsides of several dying children. I monitored them closely; responded promptly to ensure their comfort, spoke gently to calm them and provided support to their families.
My daughter Tiarna died at home in 2003, aged just three years and three months and surrounded by people who loved her. We held her and comforted her and were able to continue being her loving parents until her last breath. This was only possible because we had the support of a community palliative care nurse who managed her symptoms and ensured that she was receiving all the medication needed to guarantee that she was comfortable and free from any pain or discomfort.
My son Tristan died in 2014, just short of his eighteenth birthday. This time our access to community palliative care was limited to business hours only. When Tristan developed increased work of breathing, anxiety, and distress in the early hours of the morning, I could have called an ambulance and gone to an Emergency Department, but I wanted Tristan to die at home, in his familiar environment surrounded by people who loved him just as Tiarna had done.
However, in order to achieve this I could not just hold him, comfort him and love him as a mother. I had to be his nurse as well. The only support I could access was phone support, and even this was from a palliative care ward at a hospice rather than the community nurses with whom we were familiar. With a stranger on the phone I had to recognise the change in phase, I had to insert a subcutaneous device into Tristan, I had to draw up some serious end-of-life medications and administer them. Tristan took his last breath a few hours later.
Parents should never have to do this. It took an enormous toll on me. I questioned my actions over and over. I struggled in the bereavement period. Governments should provide better funding and services so that every parent can be at their dying child’s bedside as a parent only.
More about the author…
Maria Heaton is a former palliative care clinical nurse consultant. She was the 2013 New South Wales Carer of the Year and has been actively involved in advocacy for people with intellectual disability for many years. She currently works as a clinical nurse consultant in an intellectual disability health team in New South Wales, Australia. Contact Maria by email.
Links and resources
- ‘Widening Access to Palliative and End of Life Care for People with Intellectual Disabilities’ – a multi-media, open access, online resource. To access, Click here and login or register (free of charge).
- The European Association for Palliative Care (EAPC) Reference Group on Intellectual Disability.
- If you would like to read more posts from the perspective of patients and family carers, our earlier series, ‘Palliative Stories’, may be of interest.
We would like to thank Maria Heaton and her family for sharing this story of Tiarna and Tristan, and all our guest writers who have contributed important insight and experiences to this series. You can view all the posts in the ‘Palliative Care and Intellectual Disabilities’ series here.
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