Sometimes in life you encounter a small bump in the road that makes things just a little more complicated than you were expecting; that’s something that’s true even for families already dealing with an array of medical issues.  Our most recent hurdle was completely unexpected and fortunately had a far better outcome than could have been the case.

We have long been aware that M suffers from a low heart rate and blood pressure, something that has reared its head each time he’s had to have an anaesthetic, whatever the reason. Various medics have commented on it, left him a little longer in recovery and then we’ve just got on with life as we know it, without a second thought.  Last December however, things changed and we had to face this issue head-on. During M’s GOSH stay, it quickly became clear that both his heart rate and blood pressure were a little lower than the nurses were happy with and the ward doctors, after much discussion, decided to adjust the parameters as they felt this was perhaps just his normal – I wasn’t so sure. By the time he had started experiencing dizzy spells, had ended up lying in bed with his head lowered and having his blood sugars tested to rule out hypoglycemia as the root cause, I was concerned that it was something more and determined that further investigations were necessary.

Fast forward a few months, M continued to experience dizzy spells, though fortunately he never fainted outright despite a couple of close-calls and we had a referral to a paediatric cardiologist from our GP.  M and I headed off bright and early for an 8am appointment and met the charming Dr S, who listened carefully and made copious, comprehensive notes about M’s extensive medical history before starting his examination.  He began with an ECG to examine the rhythm and electrical activity of M’s heart and then did an echocardiogram to look at its structure.  M was fascinated by the whole procedure and questioned Dr S every step of the way, not least as he was performing the echo.  What impressed me most was the calm approach this doctor adopted to my inquisitive boy.  He didn’t ignore his questions, nor did he ask him to be quiet, but instead explained each and every thing he was looking at, telling M what he could see, what each part of the heart was supposed to be doing and uttered the words that M has since repeated ad infinitum, that he has a “Waitrose-quality heart”.

However, the ECG did show a problem with the electrical impulses in M’s heart, namely that they do not start in the right place.  Dr S reassured me that this was not anything to be overly concerned about as many people live perfectly active and normal lives completely unaware they have this condition, but the complicating factor was that M had been experiencing periods of dizziness, which needed examining further to determine whether any medical intervention was needed at this point.  So, we headed into 5 days of testing and poor M had to survive the permanent fixture of a portable ECG monitor for 24-hours a day as well as his feeding tube and pump.

There is no doubt about it, they were a tense 5 days, but M made his way through it with his usual indomitable spirit.  He had to push the green button every time he felt dizzy whilst the monitor was attached, so that the cardio team could examine the ECG results to see what was going on with his heart when these episodes happened. He also suffered an allergic reaction to the sensors that were stuck, day and night, to his body, and which left his torso itchy, red and raw for weeks afterward.  We experienced more beeping alarms in those 5 days than we had in a long time and I became adept at changing sensors and resetting monitors whenever and wherever necessary.  M and I were also able to find some humour in the situation and he agreed to leave further health problems for someone else to experience for the foreseeable future!

Fortunately, we didn’t have to wait too long to review the results with Dr S and the answers were encouraging.  M has mild sinus node dysfunction and what is known as a junctional rhythm.  At the moment, he is having regular episodes of dizziness due to these problems, but as he has never fainted, they are not considered serious enough to require any treatment. There is a strong likelihood that his NG-tube is a contributing factor to these symptoms as it is known that tubes can trigger a response in the body causing his heart to slow down and so it may well be that when his tube is removed, he will become asymptomatic once again.  Dr S will see him in a couple of years to monitor what happens as he heads into puberty as this is considered a key time for potential changes to occur and in the meantime, we will keep a watchful eye to make sure our boy stays as healthy as possible.