lqt1....... advise needed if can spare a lil min please :)

Hi

I am new to the whole LQT1 community :) found out i had the possibility of having it about 6 weeks ago found out thursday I do have it.

So this is more of a experience followed by a question :)

Firstly due to an admin error my loop recorder opp that was meant to be fitted thursday was canx so waiting for another appointment. However 6 weeks ago my overall qt was 498 .... not great i know ... so i was put on beta blockers and i had an ecg on thursday and my overall qt was 411 ! I understand it is borderline and it could have just been timing but after this yeah im chalking that up to a small victory even just for that moment :)

now the question
well im 28 and i get married in 3 weeks to my boyfriend of 7 years we have always wanted children, neither of us have children, but i really dont want to pass this on as the gene is quite strong in our family. Has anyone gone through this or can relate i have been told you can test the egg and put it back in if its a good one (sorry for the straight-forwardness) but then i have been told that I have a higher chance of cardiac arrest about 9 months after the child is born . Im going to be completely honest here I would say my concerns are about 50 percent my own, some what selfish, preservation and the rest the family i would leave behind i know that sounds bad but its true ..... maybe that makes me selfish i dunno :(

anywhos if anyone can thrown some words or wisdom my way that would be brill

take care... thank you for reading :) x

[Jerry_NJ]

I'm sure others are reading, but much of what you describe is new to me.. even as an observer/reader.

Your concerns about child baring makes a lot to sense to me, perhaps adoption is an alternative to the risks you have described.  .  

You may find input from one of the pregnancy forums on MedHelp or elsewhere.

LQT1 is not something I recognize (may be my poor old memory)... maybe defining that will help get inputs.

[lilredbetty]

oops yeah sorry ..... its long qt syndrome version 1 :) ..... ill pop it on the other forum also thank you for your reply :)

[spade22]

I would definitely suggest you join the LQTS support groups on facebook - this topic has been brought up several times and many people have been through this and will be able to give you advice.  

That said, the consensus is that this is a very personal decision.  You have a 50% chance of passing on the LQTS gene to a child but you should keep in mind that just because you pass on the gene, it does not mean that child you develop LQTS.  Some folks do not want to take that risk, while others who have brought children into this world with LQTS have said that is what makes them who they are  and they wouldnt have it any other way.  I dont believe I have seen discussions on egg-screening.  You are correct in that the postpartum period puts the mother at risk for an event however, if you are taking your medications and seeing your EP on a regular basis that should greatly minimize the risks.  Definitely something to discuss with your doctor.  The other thing you will need to consider is taking BB during pregnancy - this can have some impact on baby (lower birth rate etc).

[lilredbetty]

Thanks for replying. It's one of them not one answer fits all kind of decision I suppose it would be so much easier to have someone decide for us I think I'm just looking for as much info as I can get really as I'm getting married in three weeks and I really want to be open and honest as much as I can so their are no surprises :)

I have looked on Facebook is it literally called lqts?  I can't seem to find the correct one its okay if noone knows :

I feel like I have one foot in each part for for and against I mean we all have spelling mistakes in our dna I suppose just wish mine was related to something like my big toe instead of my heart :)

Thank your again for your advise :)

[spade22]

LQTS families and support, and Long qt strong.  Both are closed groups so you will need to request to join. Send me a PM if you need more help.