Hi my son is 15 years old, was the 1st ever case of Ebstein’s in Scotland. He was born with moderate/severe EA, also with an ASD. However at 3yrs old they decided to go in a close it with a Helex device, as my son was exhausted all the time and had reocurring episodes of cyanosis. After they closed it my son came on leaps and bounds. As we are in Scotland and there is lack of experience with EA my sons case was always a wait and see if. He got 5 yrs and then ectopic beats started to present. He got another 6 years before he started to get really sick. Both atrial and ventricular arrhythmias started to present, causing many other symptoms. My sons files were taken over to the mayo in 2011 and Dearani told our team my son needed surgery ASAP. For me to take my son to the mayo we would have needed to raise somewhere in the region of £250,000. Fortunately for us a charity stepped in and met cost of sending our team back and forth to the mayo on educational visits to see the cone procedure being done. The also met costs of GMC registration for American surgeon to operate in our country, again they met costs of Americans, flights, food, and accommodation whilst in Scotland. We were told at my sons yearly appointment in January 2012 my son was being prepared for surgery. I believe Dearani told our team exactly how long they would get before my son got really I’ll, he got 5 months after that appointment and his health started to rapidly decline. Due to red tape this and red tape that my sons op was cancelled 3 times. Eventually Dearani was unable to attend at the time of my sons op so links had then to be established at Boston’s sick kids hospital with professor Pedro Del Nido. My son was so sick he was here within a fortnight. Fortunately for us the professor was able to talk our surgeon and team through the full procedure without having to take over or intervene at anytime, which now means the cone procedure can be done in Scotland by an awesome surgeon who goes by the name of Mr Mark Danton. Dearani opted for the bi directional shunt and Glen, Del Nido went with the maze and cone procedure instead ( maze procedure does not work in every cardiac patient) again fortunately it worked for my son and is a lot less riskier than the shunt and glen. My son had an ablation procedure carried out 2 weeks before op to see if he had any extra pathways etc, again fortunately he had none. He eventually got his op on 17th of April 2014. He is now 10 months post cone and maze procedures and is doing very well. He was on Amiodarone for 6 months after op for his rhythm issues, this was stopped end of October and not as much as an ectopic beat has been picked up on his ECG’s. If you could have seen how ill my son was before his op and then see him now it looks like 2 different people. He still has trivial leakage but the atrium looks good and the ventricle is still functioning well. I know in the future he will need more surgery but for now I’m quite happy holding onto everything is all good, 1 day at a time. I thank god, the charity the Americans and our team and all who were involved during and after with my sons care, everyday for giving me that gift, the gift is of that my son is still with me something that back then I was told, prepare yourself for worst case senario as today may not have been possible.
I hope reading my sons storey gives you hope, god bless and take care xx