Maria and Tristan

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When my son Tristan was 12 days old, he had a seizure. I took him to the Emergency Department of the Children’s Hospital where I work as nurse. This was at midday. A scan was immediately ordered and by 5pm we had a diagnosis of a condition called Lissencephaly, a rare condition caused by brain abnormality. I had never heard of it but I knew my life had changed immediately. They told me that Tristan would be unlikely to live beyond one month. That was twelve years ago.

My husband and I were devastated. But we decided to treat him like a normal baby. It took months of trials on different drugs to get his seizures to a manageable level. The doctors say it is unbelievable that Tristan has survived.  He is now on 4 different anti-convulsant drugs and still has at least 1 seizure a day. He is also fed through a gastrostomy and has sleep apnoea which requires a machine to help him breathe at night. 

With a child like Tristan, we have had many visits to hospital but there is one visit to the emergency department that is etched into my memory. Tristan was 8 years old and he had just got a new button for the gastrostomy. Within a week, he started vomiting fresh blood. We rushed him to E.D. where the staff immediately started putting in a cannula. Then a senior doctor, whom I knew, told everyone to stop what they were doing and said to me, ‘Maria, do you want us to continue to treat your son?’

I was shocked and filled with disbelief.  This interruption was delaying the emergency response. I had been told that Tristan could die from a seizure or pneumonia, but no one ever told me that he might bleed to death. It was so awful that he said this in front of all the staff. I felt that everyone stopped what they were doing and that every eye in the room was on me. I said to them to do what needs to be done and that the simple fact that I had brought Tristan to the ED meant that I wanted him to receive treatment.

Later on, while reflecting on this incident, I wondered if I had brought my daughter (without a disability) into the emergency department there would be no question that they would treat her. I wanted to ask the senior doctor what he would do if it were his son. Would he let him bleed to death? I also thought about what would have happened if I had stayed at home and done nothing, and if Tristan had died at home. Would I have been charged with neglect?

It is so insulting to families that some doctors think it is their decision to make the judgement as to whether my child is worth treating. They may think they are acting in the best interests of the family but that is not their role. I just want them to help my son to have the best possible quality of life.

The doctors know nothing of our family life. While I know that few children with Lissencephaly live beyond a few months, I believe that everyone has got their time in life and no-one can predict what the outcome will be for children like Tristan. He is a happy boy; he smiles a lot and is so much fun to be with. We are certain that he knows much more than he is able to communicate. Along with our 14 year old daughter, Tristan is a valued member of our family. 

Maria Heaton