Jasmine’s Story – As told by her mother Andrea
Identical twins Gabrielle and Jasmine were delivered on Christmas Eve 2002. Their long term survival was questionable from day one. They both had heart defects and severe respiratory problems, however most devastatingly they were both found to be suffering from congenital bone marrow failure disease.
I have always been a strong advocate for immunisation, and I knew that protecting these fragile little twins from illness was especially important. They received their scheduled immunisations and we went to great lengths to keep them as safe as possible from infection. Nevertheless, the girls were regularly sick and given my heightened level of surveillance it seems somewhat fateful that I didn’t immediately recognize the severity of Jasmine’s condition on a particular day in June 2003.
She slept a lot and I assumed that her hands were cold because it was a very cold day. However around mid afternoon I noticed a look in her eyes that frightened the life out of me. The Flinders Medical Centre neo natal unit had an open door policy for us, and luckily Jasmine was seen to immediately.
When we first arrived at the hospital there had been no signs of the tell tale “rash”, but within an hour or two it started. I remember the words “meningococcal” and “survival” being mentioned, however at that stage I naively assumed that the situation was being exaggerated.
Things progressed quickly and before long we were asked for permission to incubate. We agreed without hesitation but things were moving too fast and she crashed before there was a chance to perform the procedure. At this point we were literally shoved out of the room while our baby was revived and placed on full life support. By about midnight much of her body and face was that horrible dark purple colour. Her temperature was still climbing and we were told that there was virtually no chance that she would survive.
We watched and waited for a few more hours, alternating from silent disbelief to wailing hideously. Witnessing what this disease was doing to Jasmine’s body was utterly harrowing. At about 4am I did something I never imagined that I was capable of. I asked for it to stop. Everyone present knew it was the right thing to do. Within minutes she was taken off support and placed in her Father’s arms to die. I watched on helplessly, too scared to even touch her.
During the course of the night there had obviously also been concern for Gabrielle as she had been in contact with her twin sister. As a precaution she was also admitted and put on antibiotics. This being the case, we were back at the hospital within hours of Jasmine’s death.
It was during this visit we were told that Jasmine’s blood cultures revealed that she had pneumococcal rather than meningococcal which had been the original clinical diagnosis. I had literally never heard of pneumococcal until that moment. Whilst the name of the infection was to some extent irrelevant, the most jarring part of the news delivered to us that morning was that a vaccine existed but wasn’t routinely available. The doctor then went on to tell us that he expected that it would be only a matter of months until it was included on the National Immunisation Program Schedule. That is exactly what happened.
I have never been bitter or blamed anyone for what happened to Jasmine. Nature can be cruel and perhaps this was just a simple case of survival of the fittest? Having said that, Gabrielle is now a happy (and mostly healthy) 14 year old, and I have no reason to believe that Jasmine wouldn’t be equally happy and healthy if she had survived that infection.
Fortunately the pneumococcal vaccine is now readily available, although awareness about pneumococcal is still quite low. It seems that every case of meningococcal is given media attention, meanwhile deaths from pneumococcal are never mentioned. To me this seems odd given that that both of these diseases are equally capable of killing even healthy people within hours.
When it comes to immunisation, my advice is to take every advantage you can get! The fear and grief that grips you when a disease like pneumococcal takes hold of your child must surely be far worse than any other fear a person may have related to this topic.