Following Dr. Krous' advice at the time, we had made contact with CRY, Cardiac Risk in the Young, an Irish charity that helps screen family members of people who died suddenly to help diagnose/rule out any possible conditions that might have caused that sudden death. Their screening centre is Dublin based and so that is where we went Tuesday, August 21.
All three of us underwent a number of tests. ECG, ultrasound scan of the heart, 24 hour ECG and both the husband and myself were put through a stress test also. They stopped short of putting the baby on the treadmill too :). The staff were wonderful and kind and made the whole experience a lot less daunting than it could have been.
I must say, I was nervous going up. I guess, we both sort of played the "What if it was something I gave him?!" game in our heads.
On the day, both boys checked out ok (pending the 24hour ECG results). All seems normal and working as it should. They will want to see Eoghan back next year for a follow up...but that is all routine. Phew! Seemingly, my own ECG showed some borderline results that would be perfectly alright under most circumstances but given Patrick's sudden, unexplained death, they would prefer to do some more testing.
So...in a few weeks time I might make another trip up to discuss genetic testing to investigate further along the lines of Long QT or something similar. It is a simple blood test and I am pretty sure we will go ahead with that. At best, it will show up clear. At worst it will flag anything genetic that might be lurking and help get others in the family checked out.
I am trying to think what a possible diagnosis would mean to me. How would it make me feel.
Guilty? Because I might have given something to Patrick?
Sad? Because his death might have been prevented, had we been tested before?
Angry? Because they should make cardiac screening a standard test for all newborn babies?
I am not sure. The possibility of it all makes my heart feel very heavy at times. And it makes me frustrated...Because:
When we decided that starting a family is what we wanted to do, I did make that appointment with one of our then GP's (moved GP's when Patrick was 6 months old). I did ask what I needed to do (i.e. folic acid etc) and I did specifically ask whether there are any tests we could undergo to ensure we are both OK; that we would not pass anything to our child. Because, who knows? Separately we might be perfectly ok but our combined gene pools could produce some sort of ticking time bomb.
And what do ya know?!!?
The reaction?: What for? If everyone thought like that, nobody would have kids. If there is nothing obvious on either side...
You know, sometimes I wish some members of the medical profession would not just dismiss Joe Bloggs' worries as that of an overanxious parent/person/soon-to-be-parent/person who does not have a clue. I wish we were taken seriously in all our worries.
Fine...say that in their medical opinion there is probably no need for any testing given the good health of both parties and the absence of anything obvious. But do offer us the possibility to pursue this, if we so wish. Do not make us feel silly for bringing it up.
Either way, it will not change what already happened but if it did turn out to be something that we could have detected and possibly even prevented had we known about it, that would make his death seem that bit more senseless. I think, I would find that hard to come to terms with.
I guess, we will have to wait and see. Regardless, I do feel all children should get routinely tested for hidden cardiac conditions. The right support needs to be given to those who do get one diagnosis or another...Maybe in a perfect world...
Finally, we are very grateful to CRY for screening us and all the other families out there. The importance of their work is immeasurable.
