My son, Carsen, had an intra-cardiac fibroma, a rare condition which is basically a benign tumour within the heart which can impact on blood flow. Sadly, he passed away at six months old.
If there had been a framework for his rare condition, the experience would have been very different but there was very much a “wing it” approach. This meant that Carsen was prevented from getting the treatment he needed.
We were told that no one had seen this condition worldwide, which simply is not true - at that time he was one of only approximately 200 cases seen across the world. The family had no idea that specialist centres exist that deal specifically with this condition. We were not given all of the information we needed to make an informed choice.
The hospital did not consult with international colleagues, other than Melbourne. Melbourne had only ever managed one case unsuccessfully, but Boston, for example, had a 100% success rate.
The hospital based their decision to carry out surgery from reading literature papers, but as the literature pool was so limited, they needed to educate themselves by contacting colleagues who had such experience.
Carsen faced inequality at every stage, and we believe that New Zealand did not have the skills to manage his condition, yet proceeded with treatment even though this was not in line with other major centres in the world. They did not fully inform us, and the decision we made to proceed with surgery was under the duress that he could collapse at any moment, even from a cold.
We are of the opinion that Carsen did not get the care he needed, and this was discriminatory based on the fact his condition was rare. There were a multitude of fateful errors and if there was a National Rare Disorder Framework, we believe the outcome could have likely been very different based on other cases.
Simple things such as care plans were very ad hoc, even though specialist centres argue the need for individualised care plans due to the rarity.
Our family has taken a formal complaint to the Health and Disability Commissioner (HDC). The purpose and discussions with the HDC is for them to implement a policy within health boards which ensure if a child has a rare condition there is a framework within the hospitals, or a policy which ensures that as a minimum international centres are contacted to share information and the parents are given ALL information to allow them to make a decision which is best for their child.
We believe that the HDC legislation does not support fair investigations for children with rare conditions and means that they are not entitled to the same expert advice that someone with a known condition would have.
From our experience, the inequality goes on. Whilst we are not angry about what has happened, we do feel that we need to use our experience to facilitate change and show the fatal errors which can occur without a framework which protects children in such circumstances.