My little boy Ryan who is now nearly 5 Years old; on his second day of life stopped breathing. Ambulance officers worked on Ryan on the scene, we were transported to Westmead Children’s hospital via ambulance where Ryan underwent numerous amounts of testing including lumber punchers and brain scans. These invasive procedures caused Ryan’s surface veins in his arm and legs to collapse. Ryan’s heart beat remained low for a lengthy period of time to the extent where a nurse was appointed to pinch and turn his skin every time his heart rate dropped below 80 beats per minute. (The normal beat for a new born is around 180 beats per minute.) After 5 days in the ICU Unit (GRACE WARD) they still had no clue as to what had caused Ryan’s apnoeic event.
This is the staff administering the antibiotics through the cannular in his head.
We have had many doctors appointment s and visits from the community health nurse to check on Ryan health and check on my wellbeing. My husband and I were ok as long as Ryan was alive. Ryan’s heart rate was monitored for six months on a 24 hour basis for any apnoeic episodes. During those six months we travelled forty minutes to Westmead Children’s Hospital on a fort nightly basis and to attend to SIDS and sleep apnoea research department to download the data recorded on Ryan’s monitor. If Ryan had of passed away on that day the doctors say Ryan would have been diagnosed as SIDS statistic because there was no evidence of any underlying health problems, he was clinically well. Ryan will have extensive monitoring in the coming years as recent test have show he has developed central apnoea. Like SIDS, these issues go undiagnosed until it is too late.
I am passionate about raising awareness and funds into research of this syndrome; my aim is that by raising money scientist may find a cure or the trigger thus preventing other parents experiencing these tragic events.
We are the lucky ones