*** Pregnancy mentioned** Pregnant after terminal diagnosis (how to cope and have hope)

jess123456

*****Current pregnancy mentioned*****





Hey ladies,

I hope it's alright that I am coming here. I am looking for some hope because I am really terrified. My signature hasn't been updated but my story is that I have had five losses (no living kids) over the past four years. All losses were in the first trimester except for our loss with our daughter in the second trimester. Two out of five of my losses have been for terminal chromosomal reasons (two different trisomies) including the loss of our baby girl.

I am so thrilled and blessed to be pregnant again and have just started my 10th week. I have been doing ok mentally up until now with the help of multiple ultrasounds and a doppler but because we will be having the Harmony test and NT scan done very soon, I am terrified. I had a horrible nightmare last night that we received another terminal diagnosis and I couldn't stop crying in bed because it felt so real.

I know no one knows what the future holds for us but I was wondering if anyone here can relate to this feeling when it comes to the genetic tests due to losses and how you managed to get through these terrifying weeks of testing. It's important to note that both me and DH have had full karotyping done and nothing has come up. It just appears to have been very bad luck. The idea of having something rare happen over and over again is really messing with my head and I want to be as hopeful as I can be. I find myself analyzing my 9 week ultrasound for any kind of sign which I know is ridiculous because it's too early to tell. Baby has been growing so well and even measuring a couple days ahead. All other pregnancies have always measured behind so I am clinging to that as much as possible.

So sorry for the long post but if anyone has any advice on how you coped with this I would be so grateful. I am planning to see my therapist this week too.

Thanks in advance!!

ravenclaw1

I don't have any advice to help you cope, just wanted to wish you luck and a healthy pregnancy

chloebeth930

We didn't have any type of terminal issue so I can't relate there, but I think that with any previous loss and being pregnant again, it is so hard to have hope that this time it will turn out ok.

The thing that helped me was by just reminding myself that this is a new pregnancy.  I would actually get mad at myself because I would think that when this baby does come, I would be regret all the time that I spent worrying away my pregnancy.  You just have to have faith in your little one that they are a fighter and that in 7 months from now they will arrive. 

I am a constant worrier and I just finally had to say to myself that worrying won't change anything other than creating a more stressful environment for baby.  Everytime I would do the "what if this baby doesn't make it" scenerio in my head I would also force myself to imagine "what if this baby does" and that is the picture I would try to hold on to when things got bad.

ProfessorPedals825

I'm so sorry you're dealing with so many emotions right now.  I had a terminal diagnosis/loss with my first pregnancy, and it was very heartbreaking.  I was also so nervous about a similar diagnosis when I became pregnant again.  The only way I really dealt with calming the nerves was talking about it as much as I could.  It was great to be able to come this community and find ladies that had similar situations offering comfort and prayers.  I hope that I can do the same for you.  Best of luck and if you ever need to talk, you can PM me as well.  ((HUGS))

jess123456

andreahshields said:

I'm so sorry you're dealing with so many emotions right now.  I had a terminal diagnosis/loss with my first pregnancy, and it was very heartbreaking.  I was also so nervous about a similar diagnosis when I became pregnant again.  The only way I really dealt with calming the nerves was talking about it as much as I could.  It was great to be able to come this community and find ladies that had similar situations offering comfort and prayers.  I hope that I can do the same for you.  Best of luck and if you ever need to talk, you can PM me as well.  ((HUGS))

Thanks so much for your encouraging post and I am so sorry for your loss and that you share this heartbreaking experience. Can I ask if the worry ever got more manageable after you knew that your baby was healthy? I imagine that we never stop worrying of course but I am very curious about this because I have never had a healthy pregnancy (hopefully with the exception of this current pregnancy). I still say "IF" this baby comes home in November etc.

ProfessorPedals825

jess123456 said:

I'm so sorry you're dealing with so many emotions right now.  I had a terminal diagnosis/loss with my first pregnancy, and it was very heartbreaking.  I was also so nervous about a similar diagnosis when I became pregnant again.  The only way I really dealt with calming the nerves was talking about it as much as I could.  It was great to be able to come this community and find ladies that had similar situations offering comfort and prayers.  I hope that I can do the same for you.  Best of luck and if you ever need to talk, you can PM me as well.  ((HUGS))

Thanks so much for your encouraging post and I am so sorry for your loss and that you share this heartbreaking experience. Can I ask if the worry ever got more manageable after you knew that your baby was healthy? I imagine that we never stop worrying of course but I am very curious about this because I have never had a healthy pregnancy (hopefully with the exception of this current pregnancy). I still say "IF" this baby comes home in November etc.

I wish I could say yes, but the truth is I still worry and she just turned 1yr a few weeks ago.  All you can do is take it a day at a time.  On the PgAL board, we always said "Today I am pregnant, and I love my baby."  And just remember, it's completely normal and understandable to be worried, just don't let it consume you that you don't get to really enjoy this pregnancy.

jess123456

@PugLife5869‌ Thank you so much for sharing your experience. I am so sorry for your losses. You are absolutely right. It isn't fair that any of this ever happens. I really appreciate you sharing what your doctor said to you. My husband and I weren't talking about this pregnancy much for the first few weeks because we were so scared that it was all going to be taken away again. I think that I have purposely disconnected myself a bit to protect myself but you are absolutely right. I know it won't hurt any less. I am hoping to be joining you ladies here in 30 weeks!

jess123456

@PugLife5869‌ Congrats to you as well!! I meant to ask, what is the AL board that you mention? I have been on PGAL and the Loss board. I can't seem to find AL on here.

jobiann

@jess123456 I don't have any great advice to you but just wanted to say congratulations and (((hugs))). I know being pregnant after two early m/c was very difficult for me to be pregnant again and constantly worrying if it would happen again. Some days I was fine and kept telling myself this is a completely different pregnancy and not to worry myself about it and other days I just wanted to cry constantly. On those days I really turned to my H and our parents. They helped me get through the tough times. Try to find a happy thought/feeling and cling to it on those bad days. 

Mmm79

I have had two losses, and undergone karyotyping to rule out a genetic issue due to some family history- so while I haven't been in your shoes, I do know how stressful waiting for those results can be.  I tried to distract myself- book, movies/tv, music, going for long walks/hikes, plans with friends and family.  Anything to keep my mind busy. 

I also echo what PugLife5869 said about eth A/S being a bit of a turning point for us to- and when our vocabulary changed from "if" to "when" in regards to our baby.

 

I hope this time is your rainbow baby.  And I agree that PgAL is also a great place to find support.

KikiCohen

I don't have any experience, but I wanted to offer you lots of hugs.  I hope this is your take home baby!  

BootsOrHearts

I'm so sorry for all of your losses.

I've had the Harmony testing done twice, once with my first pregnancy, the results came back normal but we still lost our little guy (for unknown reasons) and the second time the results were normal and we got our rainbow baby, but it was terrifying both times because of my age (38 and 39 respectively). And hopefully we will endure the terror one more time as we are trying to add to our family!

I don't have a lot of advice except just to distract yourself while you wait. Usually the results come back pretty quickly.

I hope this is your rainbow baby! 

bluebonnetmeg

I am so very sorry for your losses. I completely understand your fear and worry. Like some of the previous posters, my loss was due to anencephaly. I felt like a weight had been lifted when we saw two beautiful little brains around 11 weeks during my next pregnancy. It didn't stop the worry completely, but it did help tremendously. I also had a horrible, very real-feeling, graphic nightmare in my first tri that shook me up for a long time.

I hope that you get your results back quickly and that you continue to have a very healthy pregnancy. "Today you are pregnant and you love your baby." 

HoolahZinger

Congratulations with your pregnancy. I very much hope this is your precious rainbow baby. I am so sorry for your losses. I have know advice but wish you the very best of luck. 

jess123456

Thank you ladies so much! I can't even begin to express how much I appreciate your kind words and advice. I did get to see my therapist today so that helped a lot too. I am feeling very positive about how things have gone with this pregnancy so far and will continue to take it a day at a time. Fortunately I am very close to the genetic testing and NT scan so hopefully those results come quickly. I am hopeful

kbhaynes

I don't have any advice, but I just wanted to wish you a H&H 9 months and lots and lots of sticky baby dust. I am so sorry for your losses, and I hope this is your rainbow baby!  ((hugs))

emeraudecephiro

I haven't had terminal illness losses, but my son Vincent has trisomy 21 (Down Syndrome) and I had him after 4 losses. I know if I get pregnant again, I will wonder too if the new baby will also have special needs. I know this doesnt help much but wanted to support.

Big hugs, lots of prayers for a healthy happy baby.

Ironmom2be

I'm so sorry for all your losses. We've had two losses and one confirmed unbalanced chromosomal abnormality. I can only assume the other loss was similar. After testing, it turns out I have a balanced translocation. (different than your situation) but my fear is very much there. We decided to go straight to IVF w/ PGD and even after having our embryos tested before being transferred, we still did all sorts of testing (NT, Mat21, etc) with our daughter b/c I was so scared something would be wrong and we'd lose our baby (again.) The only thing I could do is hope and pray that everything would work out. My drs were great and eased my fears and allowed us to do whatever testing we wanted (even though we did PGD) it made us feel better to know our doctors understood our fears and were willing to help us whenever possible. It never gets "easier" (all the way through my pg I was so scared) but we all just manage our fears. 

I wish you lots of luck with your current pregnancy and hope that everything goes smoothly with this pregnancy. Lots of ((hugs)) 

SciChick

Wow, I am so sorry you've been through so much. I am hoping and praying for you! I had three losses before a successful pregnancy, though they did find a problem with me and that made the difference. What I want to share from that is that one of the OB's I visited with said that getting to the 10th week was a big deal and greatly increased the chances of a good outcome. Hugs to you and I am hoping this is your take home baby!