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
Wow, that is a lot to assimilate in the face of an upcoming marriage. I think you are not being selfish not to want to increase your chances of dying if you have a child...why would someone want to have a child knowing they were not going to be there for their family? (My husband and I had this conversation when I miscarried -- he felt so vulnerable when I went to the hospital and left him alone with our 2-year-old; he felt like if I died, he would have to quit his job and care for our son, he wouldn't have the money to do that, etc. etc. etc. It was a far-fetched fear, but it was a taste of the kind of things a remaining spouse goes through if they lose their partner.) One of your possible ways to go with having a child is to look into surrogacy (gestational carriers) and IVF with your egg and husband's sperm but the gestational carrier carrying the baby. I know that is heartbreaking at first to even have to consider, but given your risks, at least you could have a child. The genetic testing that can be done on embryos is pretty amazing. If they can test, they can use only embryos that are free of the tendency.
Thank you for replying. Sorry you went through such a tough time. I wouldn't like to have a baby knowing their is a chance I would leave them in an ideal world. I have thought about surrogacy but I'm an only child friends have said they would do it but I wouldn't want to burden them I suppose. I just don't know how I would feel to take a baby off a mother even though genetically it will be my balbino :) at the moment I'm a bit like soooo many thoughts soooo little brain cells lol
I suppose their is always adoption, but I have heard horror stories about the UK adoption process so I'm a bit put off
You are right though they can do some amazing things their is always hope :)
Well, if the surrogate is doing it as a paid service, she does not see herself as the mother, so you would not be "taking a baby off a mother." Time will give you more answers about all of this. Let your doctors be your guide, especially about the question of how transmissible this is to your progeny.
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