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Genetic condition and TTC

(7 Posts)
IJustGotHitByADeer Fri 03-Mar-17 19:29:15

This might get a bit TMI but I’d rather not drip feed. Basically, I was diagnosed with Factor V Leiden last year. For those not familiar, it’s a genetic problem which means I’m overly prone to blood clotting. I’ve been advised that it increases several risks, including DVT and miscarriage. The doctor was very supportive when he explained it to me (I had the last telephone appointment of the day to get my results and he stayed on the phone after the surgery had closed to make sure I wasn’t too freaked out).

I was told to go back when I was thinking of starting a family, so I had an appointment this morning to talk through various things – coming off medication for a long-term health issue I have (unrelated to Factor V), taking preventative measures against potential risks based on history of spina bifida on the other side of the family as well as managing the blood clotting risks. I’m on 5mg of folic acid as of today, and I’ve been told to contact them as soon as I miss a period as they’ll need me in for blood tests and an early scan etc

I very much believe knowledge is power, and I’m lucky that we know about the family history, and that we were able to identify that I have the gene before it’s had a chance to cause me a problem. I’m aware of the risks and generally feeling pretty ok about managing them. But I don’t know any other women who have ttc knowing that they have it (I’ve known others who have the gene and have had children pre-diagnosis, so obviously they didn’t have anything in place to manage it).

I think I’m just struggling because I feel a bit alone. I don’t really feel able to talk to anyone about it, except my mum but she’s not affected by the gene. Also, I’m feeling a lot of pressure to start a family which isn’t helping (even though I do really want a baby) because some people just don’t understand it might be more complicated for me than it was for them.

I guess I’m just looking for other mums with conditions which increase pregnancy risks who can relate. I need a bit of a hand hold confused

AnneLovesGilbert Fri 03-Mar-17 19:38:00

It's excellent you have good medical support in place. Clotting disorders can cause miscarriages, as you know, but there are treatments they will give you that can hopefully prevent this happening. I know it's scary to know you've got the condition but you're actually in a much better position re ttc than someone with it who doesn't know as you can prevent the heartache they may experience.

You don't say what the other condition you have is and I don't know anything about spina bifida but you're in the best hands now, before you conceive, to get all the help and support you need.

Lots of people get pregnant and only find out about family history eyeh preparing for their first midwife appointment. By then you're a couple of months in!

External pressure to have a baby happens to most people and it probably does feel worse because you have these extra considerations. But you owe no one any information about something so private and the answer/response remains the same: "that's a very personal question, I'm sure you don't mean to be rude" or something along those lines. Tell them to sod off!

IJustGotHitByADeer Mon 06-Mar-17 14:07:59

Thanks Anne smile I especially appreciate the support with the badgering from other people as I'm very sick of it, and knowing things might be complicated due to my genetic problems is just making it worse! When MIL mentioned looking for nursery places for September 2020, I was just too stunned to say anything but I desperately wish I had now.

AnneLovesGilbert Mon 06-Mar-17 14:46:40

Of course you're left dumb struck when people say things like, it's literally breathtakingly rude! I'm the sort of person who never thinks of a response till 2am the following day then kicks myself for having been passive at the time!

But with the baby plans thing the crass nursery comment won't be the last time someone is a thoughtless knob about it so you can prepare a couple of responses. Practise them in the mirror.

Honestly, it's not you being rude by pointing out that they are being personal, intrusive, and overstepping boundaries of civility. "That's a very personal thing to say, I'm sure you know it's private". Or something along those lines. Alternatively, just ignore then. Make eye contact and don't say anything. Might shame them into shutting it.

user1469751309 Mon 06-Mar-17 15:06:42

Hi Op I have a genetic condition won't go into details as it will be hugely identifying as it's quite rare. There was a 50/50 chance of passing it onto my Dc's and it was a huge risk to go ahead with the pregnancy for my own health but after much sole searching I realised I cope so well with what I have if the baby had what I had I would be in the best possible position to teach them how to overcome any obstacles associated with it as I have it myself. I am now the proud mummy of two very beautiful baby girls who don't have my condition. If I'd have listen to other people's opinions I would never have been brave enough to go through with it. Goodluck op on what ever path you choose to follow just make sure it's the best decision for you and not those around you. flowers

IJustGotHitByADeer Mon 06-Mar-17 19:02:32

User1469 that's such a brave approach to the situation, you sound like such a strong person smile will try to focus on your way of thinking with my own pregnancy when the time comes

IJustGotHitByADeer Mon 06-Mar-17 19:04:57

Anne you're absolutely right, it's incredibly rude and it wasn't the first time either - DH took the dog out for his bedtime toilet trip and MIL pointed out "he's such a good daddy" - I shall have to be braver in future

But I do make excuses for her. DH is an only child and has no DC yet so in terms of being a grandparent, all her eggs are in my basket as it were. I shouldn't make excuses though

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