*TW* Pregnancy loss due to fetal defects update

auriculatus

Hello again everyone,

I said I would update so here I am. I hope everyone is having a healthy and happy pregnancy so far! We're all in the second trimester now I think! Hopefully the morning sickness and other awful symptoms have eased up on you guys.

So last week we met with the maternal fetal medicine doctor, the genetic counselor and a social worker after our ultrasound. Unfortunately they have confirmed the diagnosis of acrania (exencephaly). Everyone there was absolutely amazing and we actually spent 6 hours at the hospital. All of our questions were answered and we were given options. 

I thought you might like to hear what we have chosen, but I do want to add a big trigger warning for termination of pregnancy before I get into detail.

So we have chosen a bit differently than most would. We are not going to go full term and we are not doing d&e. I am going to be induced at around 19 weeks in the hospital. We chose this option after reading stories of babies with this diagnosis born full term and to me a d&e seems so impersonal for a baby who is so wanted and loved. That is not to say a d&e is not the right choice for others, it just isn't for me. I am so happy to be pregnant for as long as possible and I would like to see my baby and be able to hold him/her to say goodbye. It is a long and grueling process since my body and baby will not be ready to give birth yet, but this decision is where my heart is. I love this baby with everything I have.

We get an amniocentesis next week to find out the sex of baby and to see if there are any chromosomal differences. We will also find out if this condition was genetic or just a fluke. I'm terrified of the big needle going through my stomach but from what I’ve read it isn't so bad. We will at least get some answers so it is worth it.

They said if I ever do get pregnant again, they will see me at the high risk clinic if I would like for early screening & my ultrasounds just for peace of mind. They truly are a caring team. I cannot stress enough how lucky I am to have such a wonderful team behind me, this includes my midwife.

Tomorrow we visit the midwife to get a recording of baby's heartbeat (it'll be the first time we get to actually hear it!!!) It's bittersweet but it will be an amazing memory to have.

Anyways, that's my update and I'm sorry it isn't happier. I do want to thank you all again for being here and so supportive during my first pregnancy and I wish you all the best! Have a wonderful pregnancy everyone! ❤

nopegoat

I'm so sorry to hear this update but I'm truly so glad you have an amazing team to help support you through this devastating journey.

How special to get to hear the heartbeat and get a recording. I know a few moms that kept a special stuffed animal or other keepsake with their baby's heart beat on it for themselves and for their future kids to bond with their sibling. ❤️ 

If you feel up to it, I hope you will continue to update us on your current LO and if/when you decide to conceive again. We'd love to support you in any way we can. So many prayers, hugs, and love to you, your precious little one, and your family. 

babymac4321

Thank you for sharing with us. I am so incredibly sorry that this is the way this is going for you. My heart is with you.
I think you are making such a great decision for yourself, husband and baby. 

Being able to hold that baby and take in all of the features is such a special thing that I’m sure you will cherish forever. How special that this baby has known nothing but absolute love, I think that’s beautiful. 

I had a family member make a similar decision for a different diagnosis and it was the hardest thing she ever had to do but it was also the most healing for herself and her husband. I hope you and your husband will find the same comfort. 

If theirs anyway we can help support you please let us know. 

Sending love and support to you ❤️

muggsd

I am so sorry to hear that your little one is not destined to be with you for long.  Your attitude and commitment to your child is incredible and I am happy you have a supportive and caring team to guide you through this. 

All of the hugs and prayers to you and your family as you navigate the next weeks & months. 

Wishilivedinflorida

I am so so sorry to hear this update but I am so glad you are in the hands of a caring team that can do what Is best for your family. I hope your induction is smooth and I hope so much you get needed answers from your testing. Im sorry this is how things turned out but I am hoping and praying so much that things in the future go differently for you and that the rest of this pregnancy does not present more challenges. 

I am so glad you get to record the heartbeat. It is something I regret not having from my prior losses. I hope you are able to memorialize it for yourself so that it brings comfort. 

Please come and update here if it’s something you want to do. I’ll be thinking of you in the coming weeks. 

heytallmama

❤️ I’m so sorry you’ve had to make such a difficult choice, but I’m glad you’ve been able to *make* that choice and do what is best for you, baby, and family. Best wishes for a smooth induction and delivery, that the testing helps provide the answers to help you move forward, and overall- just comfort in the weeks ahead. 

disneybaby23

Im so sorry to hear of the news. I’m go glad though that you’re surrounded by such a caring team to help guide you through such a tough time and that they want to help you get information and answers too. Best wishes to you and your family through this whole process and that you find healing and comfort. 

firecracker_mama

I'm very sorry for your loss and what you are going through. You are making an incredibly difficult decision and you should know that whatever decisions you make are the right ones for yourself. You and your partner are in my thoughts.

missmuisq

I am so sorry you and your family are going through this. That must be so hard. You seem incredibly strong and loving, and it's clear that this baby is so treasured during his or her time with you and beyond. I hope you’re able to have a future child(ren) and tell them about their much-loved sibling one day, if that feels right to you.

I’m glad you have such a strong team around you and that you were able to reach what felt like the choice that will bring you the greatest measure of peace. It’s beautiful that you’ll be able to hear baby’s heartbeat and hold him or her close.

Thank you for sharing this with us. I know that we are all hoping for new opportunities for life for you as soon as you feel ready. Hugs and healing to you.

excitedforpiscesbaby

I’m really sorry you’re going through this. Sending positive, healing thoughts to you and your partner. I’m so glad you have such a wonderful support network. We’re here for you if you want to share more of your experience. Wishing for only good things for you going forward! 

mytrueloves

Thank you for keeping us updated. I know this much be such a difficult time for you and I'm so sorry to hear how things have turned out. What a difficult decision you've had to make. I completely understand your reasonings for the choice you made. Sending you so much love and I'll be keeping you in my thoughts

mamahosch

Thank you for updating us and I am
so sorry that you are going through this. Know that we are all here for you and I am so glad you have a wonderful team to support you through this! You are making the best decision for yourself and for your family ♥️ Thinking of you!!

auriculatus

Sorry everyone I just posted this and ran, sometimes I feel good about sharing and discussing but then immediately break down lol.

@nopegoat We'll be putting the heartbeat into a little teddy bear. Thank you so much for your prayers and well wishes. Idk if we'll start trying right away again. Maybe we will work on our own health first, especially mentally. This experience has changed how I feel about my own pregnancies. It's funny, I never wanted to find out the sex til I give birth. But now if I ever get pregnant again I'll be getting NIPT as soon as I can to find out 😂

@babymac4321 thank you so much for your kind words. It's nice to hear others have made the same decision (obv not that they had to make it tho) because my husband has been made to feel kinda weird about it by coworkers. They'll say to him things like "Oh I could NEVER. I'd have to terminate right away!" I think it will be the most healing decision for us, especially since I will get to take home his ashes. Tbh I just wish I could stay pregnant forever.

@muggsd thank you so much. That's very touching and it means a lot for you to say that.

@Wishilivedinflorida thank you! We're actually going in tomorrow to get another recording, I hope it turns out a bit better. I'm sorry you didn't get to do the same.

@heytallmama Personally, I never thought I'd ever terminate a pregnancy. But it seems the kindest option and safest for me too. Luckily in Canada this is all covered for us. I checked prices of amniocentesis and the WinRho shot in the USA w/o insurance and I'm appalled. I appreciate your well wishes.

@disneybaby23 Thank you so much!

@firecracker_mama Thanks! It's an awful decision to make, but it's definitely the right one. Thank you for your support.

@missmuisq Thank you. My first son will never be forgotten & will always be spoken about and treasured. If we do have future children, they will know about him for sure. This is the most devastating thing I've ever had to go through, but I'm just cherishing our time together. Especially when I feel him move. ❤️ I am so thankful to have all of the support here, truly.

@excitedforpiscesbaby I appreciate that, thank you. You guys here have definitely been a big part of my journey and I'll always remember you all!

@mytrueloves Yes, it's actually the most devastating thing in the whole world. He may be a fetus right now, but he will always be just as much my child as any I may have earth side in the future. Thank you ❤️

@mamahosch thank you! I'm very glad to have everyone's support here and even if I'm intermittent I'm always thinking of everyone and wishing you all nothing but the best!


Whew that was a lot. I wanted to make sure I got to everyone because you all have been a huge help and comfort! Thank you all so so so much!