I still remember the day we were given a diagnosis for our 2 year old son, Levi, like it was today. “Your son has an incurable, neurological disorder which he has inherited from his parents called Metachromatic Leukodystrophy (MLD). This has never been seen in either family and it is relatively rare – about one in 40,000. Now we have to make life as comfortable as possible for him. This took some time to process, but bless our neuro doctor, he said he will have a nurse call us who will know about our situation and will have a chat, as she has dealt with a case or two like ours before. Oh dear, someone to talk to about our tragic news.
What the doctor didn’t tell us was that the nurse was a specialised palliative care nurse with a whole team of people and resources behind her that she utilised very well. Welcome the Palliative care team of Princess Margaret Hospital! Stephanie, the palliative care nurse, Shelley the social worker and all the wonderful people with expertise in their areas at the hospital. After a year of searching for help and trying to find out what was wrong with Levi, it was like winning lotto! The team offered a haven we had never found before, someone to talk to when Levi was doing something different, helping to get aids to make life more comfortable, getting paper work together to get other services to help manage Levi’s condition, even help to obtain financial support. And the best bit is making friends in a world we have never needed to know about before. Although they are there primarily for Levi, we as a family are never forgotten, asking how the rest of the family are, offering opportunities for the families to attend shows, a picnic in the park or even just an ear to listen.
So we no longer struggle to care for Levi due to a tremendous network of help which all started from our palliative care team. It has been just over a year and there have been many developments in Levi’s condition. The loss of his ability to eat or drink orally, loss of eye sight, a very muscle tone-free body which is supported by those who help him with all his needs, and a respiratory system which is constantly being compromised by a cold or flu. All of these moments were anticipated by the Palliative care team and there was always support and avenues to deal with these hiccups.
We have learnt to take each day as it comes, and a majority of the time we forget the serious nature of living with a seriously ill child who already has a number of days allocated to be with us. But that is life and this is ours. As we have regular contact with the hospital, Levi still shares one of his million dollar smiles with the voices he recognizes. Especially when they remember his love of motorcycles and give a great impression of one. Bbbbbbbbbbbbbbbbbrrrrrrrrrrrrrrrrrrooooooooooooooooommmmmm!
Quality education is the only way to ensure that more children with a life limiting or life threatening condition receive the holistic support that palliative care provides. Children attended to by a health professional trained in the principles of palliative care will experience a better quality of life, better pain and symptom control and the appropriate care at the time of death. Consider helping children like Levi access palliative care by giving to the ICPCN Christmas Appeal 2016. This project will help fund ICPCN training and education programmes. Click here to donate.
© Touching Rainbows, ICPCN, 2012
ICPCN publication Touching Rainbows can be purchased via the ICPCN website