Our darling baby boy, Conor James Funke, was born 23 October 2017. He was perfect and healthy. We were thrilled that, unlike our first born, he didn't need a visit to the NICU and he was able to come home with us. As the days passed, he became more and more sleepy to the point where he didn't even want to feed. We made an appointment to see his paediatrician on the Monday, and after just four days of being home, he was admitted to the NICU with a suspected infection. Tests revealed that he in fact had a virus. Enterovirus to be specific, which refers to a group of single-stranded sense RNA viruses, which are commonly encountered infections, especially in infants and children. While this group of viruses usually causes mild illness like hand-foot-and-mouth or an uncomplicated cold, it can, as we discovered, be more threatening. Encephalitis, myocarditis, or neonatal sepsis are some of the more major effects.
The strain of Enterovirus that Conor contracted, Coxsackievirus B, attacked his heart and left him with myocarditis, left ventricular infarction and cardiogenic shock. At a week old he had a heart decompensation and was transferred to a specialist cardio-thoracic ICU (CTICU) for more focused treatment. While we held hope for his recovery (as in neonates its difficult to know what to expect; they could either recover completely or deteriorate rapidly) the damage to his heart was severe. A week after being in the CTICU he developed pneumonia and had to be put onto life support - Extracorporeal membrane oxygenation (ECMO). Despite best medical efforts, Conor passed away on 17 November 2017.
Conor's condition was rare and there were limited medical options for him as a neonate. In his honour, we have established the Conor James Foundation to raise funds for research into myocarditis in infants younger than 6 months old and for the development of educational material and support services for families whose children are affected by this disease. We hope that the Conor James Foundation can positively impact the lives of others and ultimately contribute towards finding effective prevention and treatment options.
26 Days of Conor *23/10/2017 +17/11/2017
We know how powerful storytelling is; we have seen the impact it has had in a healing journey for both the storyteller and those reading/listening to it. So, we have decided it’s time to share Conor's journey from birth through his fight against viral induced myocarditis in snippets reflecting the 26 days of his life.
We are sharing Conor's story from our perspective for our own healing certainly, but mostly in the hope that it will touch another parent who needs to know they are not alone. Who needs to know we understand that the trauma of having a critically ill child in ICU is a heavy load to carry. Who needs to know that in telling their story they may help others in their darkest hours…..
If you would like to share your story with us, we would love to hear from you.