Loss and Pregnancy with Potential Loss

star18star · January 2016

I'm not sure if this is the correct place but I feel like I'm slipping through the cracks and have nowhere to turn. We ended a pregnancy at 18 weeks after a genetic diagnosis of Spinal Muscular Atrophy. I feel like I don't belong with those grieving a loss out of their control but choosing this doesn't make it any easier.

We found out we were pregnant in March 2015 and were so excited. During my routine bloodwork it came back that I was a carrier for SMA. My husband got tested and we were devasted when he tested as a carrier too. We decided to pursue genetic testing and found out at 16 weeks that the baby was affected most likely with Type 1. With that diagnosis most children won't survive to age 1.

We we struggled for weeks about what to do. I've never cried so much in my life and felt so alone and isolated, even from my own family and husband. After carrying my child for months I felt there was no path forwards or backwards. We decided to end the pregnancy and it was the worst day of my life. All I remember is laying on the table sobbing and within minutes it was over. I feel like I aged years yet no one besides a few friends and my immediate family even know what happened.

I have four sister and two were pregnant while I was pregnant. I feel like I can't even be around their kids and get so angry at those who are pregnant with no issue. Everyone keeps telling me I'm not getting any younger and I should start my family (I'm 30 and my husband is 33) and I just want to scream.

We found out several weeks ago that we're pregnant again and I'm terrified. All I can think is that we're going to be affected again and have to deal with another loss when I'm still grieving the first so much.

I guess i just just needed to vent. I'm 8 weeks pregnant and I still haven't been to the OB. I can't even think about this knowing that it could all end in loss again.

bgoodwin4 · January 2016

I wish you the best this time around, and am sorry to hear of your prior situation. Hopefully you can get tested early and put those fears to bed or address any situation that arises. I can't blame you for not wanting to see your sisters kids either and understand wanting to scream when people make comments about not getting any younger. It's so frustrating but know you're not alone. Plus, 30 is the new 20:)

kwrightnb · February 2016

I'm so sorry to hear about what you went through.. I can't imagine how painful it would be to be in that situation. But try not to be to hard on yourself or have any regrets, you did the right thing. I'll keep praying for you and your little one this time around and I hope things turn out very differently for you. Make sure to keep communicating with your DH about all your feelings, I've found that has helped me a lot for him to know how I'm feeling everyday with this pregnancy.

msunshine123 · February 2016

I am so sorry for all you are experiencing. I hope and pray that this pregnancy will be ok. Your feelings about being around other children are all normal - you miss your baby and all that should be. If people make comments to you about not getting younger and you feel comfortable enough I would just tell them " I know and we've lost a child." You don't need to share or provide anyone with details, but if you're willing it might allow others to be more supportive of you and your husband with this pregnancy. ((Hugs))

alanna3622 · February 2016

@star18star I am so very sorry for what you have gone through.

The feeling of not belonging is natural, but I have to tell you that you are utterly wrong. It is true that you made a heartbreaking decision, but in no way does that mean that you are not fully a part of this group of women who have experienced a loss outside of their control. You did not have any control in your baby being sick. You did the thing that you thought was best, and the only way to love your child.

Have you read this blog --https://katesmakinbabies.blogspot.ca/?m=1 -- this woman discovered her baby's genetic condition and terminated at 36 weeks pregnant.

Also I would suggest that you visit the website Ending a Wanted Pregnancy. It has a lot of information and testimonials there that may help you see that although the people around you do not understand (or even know) what you have gone through, that does not mean you are alone.

I have felt very alone myself, in that the loss of our son at 33w5days should not have happened -- because my doctors failed to inform me of his genetic disorder, which was discovered much earlier in my pregnancy, I was denied the chance to spare him and myself the ordeal of his life and death. It haunts me, thinking of what he went through, and that I could have given him mercy and release if only i had known. When I would read stories of other women who have experienced stillbirth, I have felt so separate from those women, thinking that those women had healthy babies who had a hope of a healthy and meaningful life -- how could i feel lIke I belong in that group. So I am a bit of a hypocrite, urging you not to feel what I am feeling myself.

Maybe all I can send you is hugs and hope and love for you and your husband and both your babies.

star18star · February 2016

Thank you all so much for your support. I'm in tears reading your messages and thinking of what you all must have endured to end up in this forum as well. It's really great to have a place to vent and share feelings about all this. It can be so overwhelming sometimes, especially now as my husband and I head into another pregnancy. My family keeps saying "everything will be ok" but we've already gone down a path where everything wasn't ok and sometimes it's so frustrating speaking to people who haven't experienced this.

And @alanna3622 I am so sorry about your son. As hard as it was knowing, it gave us the opportunity to say goodbye without the suffering and pain our child would have endured. I'm crying and heartbroken that you didn't have that choice. It was a fluke that our Doctor did carrier testing for SMA. Most don't, and I wasn't even aware I had been tested for it when it flagged. And as hard as this has been I know it would've been so much worse had we not known. I wish you all the best and send thoughts and love your way that the future holds much brighter things for you. I will definitely read those websites you suggested.

Thank you all again. We'll undergo genetic testing in 2 weeks and have results about 3 weeks after that. Thank you for helping me stay strong.

veetveet · February 2016

We had to make a choice as well. My baby was diagnosed with a fatal heart condition and multiple pulmonary issues very late in my pregnancy. We terminated at 27 weeks and it was the most horrific thing I have very been thru. Unfortunately all Of our choices sucked. But we picked what would have the least amount of suffering for him, and that my friend is the ultimate sacrifice for love. I've never in my life cried as much as I did from. The time Of diagnosis to my delivery.

I understand how you feel. I found out last Friday I am pregnant. I'm 4weeks and absolutely terrified that this situation is going to happen again. Not quite sure if my heart can take it.

Just know that you're not alone. There are lots of mom's on here that had to make a hard choice.

I wish you peace and a successful pregnancy!

drox924 · February 2016

I am s sorry. We found out after many many ultrasounds our baby might have sma as well. I am 29 weeks patiently waiting amnio results but my doctor thinks is about 80 percent sure she has it. We are so lost and scared. You are not alone I wish the best for this pregnancy

monikikazul · February 2016

I am sorry to hear about what you went through and best of luck in your new pregnancy. My situation was somewhat different but we did learn of congenital malformation after my son was born at 27 weeks and we made difficult decision to withdraw after he had been in NICU for a day and had three chest tubes placed. I often wonder how it would have been different if we had known about his lung malformation and how we would have maybe chosen not to have him go through all of that in the NICU. Certainly all tough choices. Thanks everyone for sharing their stories.

MamaBish · February 2016

I'm so sorry for your past losses and your current worries. Pregnancy after loss is so very hard. You are very brave! Hugs and positive thoughts to you and your family!

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