nathan’s story


Hi my son nathan is 16 yrs old this may and this is his story.

nathan was diagnosed at age of 8 yrs, despite having an echo at 6 weeks, looking back the signs had been there but nobody put them together, nathan had stopped breathing at 12 hrs old but after having oxygen he was deemed ok, he didnt feed well, screamed for 3 hours each day with what we were told was colic and didnt grow we spent the first 5 yrs back and forth to see paediatricians as health visitors had concerns at 5 yrs old he wore size 3-4 yrs size, nathan also on occassion would fall to the floor when out playing with his older brother (we thought he was a bit of a drama queen) it was only when he had a displaced fracture of his radius manipulated under GA that things reallystarted to show up, he began to complain of his heart pounding out of his chest GP sent us straight to A&E and he was diagnosed with WPW (wolfe parkinson white syndrome) we were told take him home we’ll send you a cardiology referral, a number of attendences to A&E left me feeling like i was being an over anxious mother, 3 months later he came down with what we thought was stomach bug 3 weeks later i started to worry he couldnt even manage to walk 200 yards, we saw gp and he sent us again to A&E when we got there he was rushed to resus as his heart rate was over 300 bpm he was eventually admitted to PICU and  had cardioversion to stabilise him the next day he was moved to a general childrens ward and on mothers day 2005 the nurses told me i was being over anxious but on insisting on him being reviewed he was blue lighted to Glenfield hospital in Leicester Uk, we arrived there at 2am and i was told not only did he have wpw but ebsteins anomaly and heart failure a pleurel effusion and the next 24 hrs would show if he would survive, he did survive but i was left shell shocked, in 2006 nathan chose to have RF ablation as he didnt want to take medicine to regulate his heart rate, his first ablation didnt work so he underwent another ablation an accessory pathway was found in his AV node and by trying to ablate it he was put into complete heart block, 2 weeks later he collapsed and was again rushed to glenfield and had a pacemaker inserted, we were told this would be for life amazingly after a year his heart function had returned and there was talk of removing the pacemaker. As far as his wpw was concerned it was cured his ebsteins depending which consultant we see goes from being labelled as mild to severe, but we know he has a large atrialised ventricle his only outward signs however are that he often looks very pale and blue around his lips and finger nails and his exercise tollerence is not like that of a healthy active 16 yr old. Two years ago nathan suddenly collapsed at school and stopped breathing he was given mouth to mouth by a teacher and taken to A&E he took 45 minutes to come around and had amnesia, his cardiologist was adamant it wasnt his heart, he had neurologist input and was investigated for epliepy which was ruled out, he then had a CT head scan (he cant have an MRI) looking for chiari malformation again this was ruled out, he then collapsed again a year later with much badgering the cardiologist agreed to do EP studies incase it was another wpw pathway, the consultant telling me it couldnt possibly be his ebsteins (even though i told him a USA site talks about clots and mini strokes) the EP studies came back normal, again we had no answers! 3 weeks ago he collapsed again whilst out playing football with his friends and stopped breathing his friends panicked and whilst one called an ambulance the other shock him and he spontanuously started breathing again when i got to him he was grey and his lips and nails cyanosed (blue) he was also clearly hypoxic (short of oxygen) as he was confused disorientated and again had amnesia on arrival at A&E we saw a polish reg who said oh its his ebsteins it must be but again the cardiologist is saying no its not, through more badgering his cardiologist referred him for a tilt table test and exercise tollerence test both normal, we are constantly worried he is an active 16 yr old who isnt having much of a life right now as we are terrified that his next collapse could be whilst he’s alone and what could happen.

Does anyone have any ideas or has anyone else known these symptoms in someone with EA