“Listen carefully, and I’ll tell you how to do resuscitation, OK?”
A sentence that no five-year-old child should have to hear, yet this is what my daughter, Aoife, was told last November during the Triple 000 call she made to save her mummy’s life. I cry every time I listen to the call. She went on to perform CPR until paramedics arrived, after her Mummy, my wife, Lindsey, had collapsed in our kitchen and was unresponsive.
Heartbreakingly this wasn’t the first time Aoife and her sister Kiera, two, have seen Lindsey like this. It has become their new normal to see their mummy unconscious on the floor.
Over the last 18 months, collapsing and losing consciousness has been a regular occurrence for Lindsey due to a debilitating condition called Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension.
POTS is a form of Autonomic dysfunction. The autonomic nervous system controls pretty much everything in your body. It is the stuff you don’t have to think about having to do (pupil dilation, sweating, blood pressure, heart rate, digestive system, temperature regulation, breathing, and more.) It is a debilitating and frustrating illness that varies from day-to-day, causing Lindsey to have regular losses of consciousness known as neurally mediated hypotension (low blood pressure fainting).
Three years ago Lindsey was a special-needs teacher, could run 10km races and was an active mum. Now she can barely function independently. She began collapsing at 30 weeks during her second pregnancy and was told that she would have to finish work early. Her cardiologist and obstetrician believed that the cause of the collapse was due to the pressure of pregnancy and would alleviate once the baby arrived. Unfortunately the symptoms did not alleviate and have continued to worsen with Lindsey unable to return to work.
These conditions have taken my wife away from me and our children. Over the past 18 months I have seen Lindsey deteriorate so much, and when I look in her eyes I can see that the light has gone out. This horrible invisible condition has consumed and severely impacted our lives and caused Lindsey to collapse over 40 times in the first seven months of 2018.
Each day is a fight with some days more challenging than others. Lindsey can feel okay one minute the find herself on the floor unconscious the next. Recently Lindsey does not wake from the loss of consciousness herself and needs to be brought around. This is a major safety concern not only for her but also for our children if they are with her.
One month on from Aoife’s lifesaving Triple 000 call, Lindsey was fitted with a pacemaker. Her cardiologist anticipated that this would eradicate if not significantly reduce her fainting episodes however this hasn’t been the case. In July alone, Lindsey collapsed and lost consciousness 17 times.
With Aoife starting school last January, Lindsey and I have had to teach our two-year-old, Kiera, how to press Mummy’s special SOS button that is around her neck if she collapses. We have also taught her how to wake Lindsey up by patting her face.
Sadly, Kiera has had to do this twice with the most serious and potentially dangerous episode happening a few weeks ago when Lindsey collapsed in our driveway putting Kiera into her car seat. She hit her face on the concrete and was unconscious for about six minutes by the time Kiera noticed and managed to get herself down out of the car and press the alert.
When pressed, the alert sends me a text that Lindsey needs help and provides a GPS location. It also acts as a phone/speaker and automatically rings me. On this occasion I could talk to Kiera as she explained “Dada, Mummy’s collapsed and not awake”. This allowed me to ring our neighbour who rushed next door and immediately called an ambulance as Lindsey lay on the driveway drifting in an out of consciousness several times.
When I received the SOS call from Kiera, I didn’t know that this was happening in our driveway. To this day it makes me feel sick to think what could have happened to Kiera – she could of ran off onto the busy main road close to our home (she’s one of those kids who likes to do a runner in public places!).
At the time of writing, Lindsey has spent the last 16 days in the Cardiac Care Unit of the hospital with doctors trying to figure out a way forward but still no definitive solutions. During this time she has had numerous ECG’s, Brain MRI, CAT scans, blood tests while still fainting at least once a day. We believe we are at the end of the line of conventional medical treatment and feel our only long term solution is a Cardiac Alert Dog, to which we are trying to raise funds for on our Go Fund Me page.
Aoife’s words on leaving the hospital yesterday, captured what we are all feeling: “Mummy, I wish that you wouldn’t faint again and then you can be a normal mummy like all the other mums!”