High risk pregnancy - how much did you share about the risks?

[TeamAwesome]

Just wondering from those that were/are high risk pregnancy how much did you share with people, other than your DP/DH and those involved in your care obviously?

TIA

[lollygobble]

I needed the support from those who care about me like my close friends and family. I am currently 20 years old and 14weeks and am currently in the high risk range for trisomy 13, 18 (edwards and pataus syndrome respectively)

[TeamAwesome]

Sorry to hear you are high risk of Trisomy 13 and 18, I am glad to hear you have good support around you though. :hugs:

I probably wasn't clear enough in my first post I mean non-supportive people. For me Dh is my main support I also have a couple of friends I can talk to, my family is out of the picture and PILs I've told most to but am unsure just how aware I should make them and others who are not as close to us of the full risks.

The risks for my pregnancy aren't just to bub but to me as well, best case scenario means bub and I come out reasonably healthy, worst case is death for both of us. An in between could mean a prem bub, an IUGR bub, stillbirth, heart problems for me, PE, thyroid storm brought on by stress of labour and there's a number of others as well but I guess I don't need to go into them. Maybe I just need to wrap my head around the risks a bit more and wait for my next appointment, I like to be logical and level headed about these things I don't want people asking me dumb things like "are you worried about leaving your other kids and husband behind" as that would be completely unhelpful at this point in time as obviously I am but trying to do all I can to ensure it doesn't happen and both bub and I are going to be closely monitered through out the pregnancy.

Maybe I'm thinking into it too much and should just tell outside of supportive people what I'm comfortable with. The only reason I've been thinking possibly a bit too much into it is that we're seeing ILs and possibly SILs on the weekend for FILs birthday and I'm sure MIL will have some questions and I will probably have to explain to SILs though doubt it will mean they will be more supportive when the time to have bub comes but I guess the information won't go astray but I was just wondering how filled in others were.

[Tls5431]

I had GD throughout my pregnancy & PE post pregnancy. Work knew about my GD (well most people knew about it but after the pregnancy). I didn't tell a lot of people that I had PE, my family & IL's still don't know. If I told my IL's they would be all me. They also don't know I have had high blood pressure since having DD or that I get my thyroid biopsied every 6 month for a thyroid issue prior to DD ( they are the interfering type and I don't want to deal with it)...

They also don't know that I'm working with an endocrinologist to get everything under control to TTC in 3 months... ;)

[TeamAwesome]

Thanks, sounds like you share about as much as I usually do.

I'm a very private person too so I'm probably struggling with that as part of it is quite personal but at the same time ILs at least need to know that something might be up.

ETA: good luck with getting everything under control and hope you can TTC when you want to :fingerscrossed:

[arabesque]

My family on both sides know that I have Hashimoto's thyroid disease, thyroid eye disease and Anti-E antibodies which may affect the baby. I have ultrasounds and blood tests every two weeks to monitor these things. A few close friends outside of family know but if other people or prying people ask too many questions then I'm just vague about having an auto-immune disease and a blood complication...nothing they can google! ;)

I learnt that the hard way when I told a group of friends and asked them to keep it confidential and one friend's DH then came up to me and told me that his mother had thyroid problems and not to worry about not being able to have more children (I was told I was possibly infertile when diagnosed with Hashimoto's) because it was "easy enough to fix". I wasn't very happy that she had told her DH in so much detail, and that he thought it was an appropriate conversation to have with me...about my fertility!

[Tls5431]

Just tell people what you are comfortable with... Some things you just may want to keep between yourself and your DH... The medical profession is there for a reason and I hope you have someone who makes you comfortable with as it makes the world of difference...

I will have everything crossed for you and hope for the best outcome for you :thumbsup:

[jenpeterock]

i had a rule and it kinda still does apply with evies medical issues, we tell both our parents everything and then they share the softened story to extended family and friends, so that i dont have to repeat myself and so that they dont freak out and smother me or evie.

unsupportive people or random strangers i just tell them the hard facts and hope it teaches them a lesson for being nosey :)

[TeamAwesome]

My family on both sides know that I have Hashimoto's thyroid disease, thyroid eye disease and Anti-E antibodies which may affect the baby. I have ultrasounds and blood tests every two weeks to monitor these things. A few close friends outside of family know but if other people or prying people ask too many questions then I'm just vague about having an auto-immune disease and a blood complication...nothing they can google! ;)

I learnt that the hard way when I told a group of friends and asked them to keep it confidential and one friend's DH then came up to me and told me that his mother had thyroid problems and not to worry about not being able to have more children (I was told I was possibly infertile when diagnosed with Hashimoto's) because it was "easy enough to fix". I wasn't very happy that she had told her DH in so much detail, and that he thought it was an appropriate conversation to have with me...about my fertility!

I'm sorry you had to learn the hard way with friends, I've learnt not to share over the years and become very private about a lot of information from not quite the same but not needed to be passed on info that's for sure. And :eek: at your friends DH talking to you about your fertility, so not on in my circle.


Just tell people what you are comfortable with... Some things you just may want to keep between yourself and your DH... The medical profession is there for a reason and I hope you have someone who makes you comfortable with as it makes the world of difference...

I will have everything crossed for you and hope for the best outcome for you :thumbsup:

Thanks i think this is what I will do, DH gets back from beign away from work tomorrow night so will discuss how much we are prepared to share and who with and will stick with that.


i had a rule and it kinda still does apply with evies medical issues, we tell both our parents everything and then they share the softened story to extended family and friends, so that i dont have to repeat myself and so that they dont freak out and smother me or evie.

unsupportive people or random strangers i just tell them the hard facts and hope it teaches them a lesson for being nosey :)

Your rule sounds good in theory though it
probably wouldn't work with our familes though as ours seem to share whatever they want and have started sharing that we're pregnant despite being asked not to yet, they wouldn't have known until this coming weekend had I not been so sick and DH asking for some support as I was in hospital (they were too busy with some friends.)

Although the harsh reality might do some nosey people good, think I might need to get a bit less emotional about the whole situation first. I haven't had to deal with or tell anyone in person yet other than medical people but have a had a cry to a friend and DH over the phone, I hate being overly emotional when pregnant as I just feel irrational so would probably burst into tears if someone said something unthinking at the moment.



Thanks for sharing girls it's made me feel a bit better and will keep them all in mind over the weekend and will have a chat with Dh before we go Sunday.

[TripleTime]

I told them what they needed to know without going into to much detail.

[TripleTime]

i had a rule and it kinda still does apply with evies medical issues, we tell both our parents everything and then they share the softened story to extended family and friends, so that i dont have to repeat myself and so that they dont freak out and smother me or evie.

unsupportive people or random strangers i just tell them the hard facts and hope it teaches them a lesson for being nosey :)


We were the same while in NICU, told the grandparents just about everything & they softened it.

Strangers/nosy people get the facts, hasnt taught many not to ask cause a few have asked several times.

[lovelymum]

We are ttc no 3 and we have chosen to keep it to ourselves that I am high risk as I dont want to be judged as being selfish as I already have the 'perfect pigeon pair'. Its bad enough saying I want another one and the reaction I get to that and only a few people who are close know that my last pregnancy was high risk as well. For me I have a history of IUGR with no explanation, thyroid disease, GD, PE and throw into it I am going to try for a VBAC - sometimes I wonder if we are doing the right thing but so far we have had very good outcomes and I have an ob who I am very confident in who I know will moniter things very closely.

[clare076]

with our second pregnancy we had decided to tell close family at 6 weeks and wait until the magical 12 week mark to tell everyone else, unfortunately at 12 weeks we found out we had a 1 in 99 risk of tri 13 and 18 and had to wait for an amnio. Originally my DP didn't want to tell anyone, but I refused to pretend the baby didnt exist, so we told everyone and we told everyone about the amnio and what they thought the baby had. Unfortunately for us our baby passed away the day after the amnio from triploidy, but the support we received was overwhelming. If I was in that position again I would probably do it the same way, I personally believe talking about things and widening your support network often makes things not half as bad to bear

[TeamAwesome]

Thanks for sharing ladies, I appreciate it.

I spoke to DH a bit earlier and we'll talk about it more when he's home tonight but have decided to tell family everything and will just share what we're comfortable with, with others.

Thanks again.

Natalie

[Smithy1]

I was just reading through this and can emphasise....its hard.

Weve known from 19 weeks that our baby has a "probable" arachnoid cyst in his brain - so we have spent the rest of the pregnancy hoping that it doesnt get any bigger and put pressure on the brain, there is a risk of this been linked to a genetic disorder as well. For us we have told close family, its very hard though as they want to say the right thing and reassure us that "everything will be ok" but sometimes I would just like them to acknowledge the fact that it might not be ok and to have some empathy.

I have told a few close friends, some have been brilliant and have just let me talk, which is all i really want, but some just dont know what to say, so we have stopped telling anyone else. I find the best support is from my husband.