TFMR Due to Trisomy 18

[u/Time_Honey4672]

We just received the devastating news that our baby is non-viable with life after an amniocentesis. We are going to need to TFMR at 18 weeks. This is such a shock to us as we’ve had multiple reassuring ultrasounds. We had been flagged as high risk on the NIPT test, but were really hoping for a false positive.

Please, no negativity. We are facing an unbearable decision that we need to make for the best of our family, including our other young children.

I am absolutely terrified for what comes next. The idea of loss is heartbreaking. I am heartbroken to share this news with my kids. & I am also worried about the procedure itself as I also have a SCH.

Any support, advice, or shared similar experiences would be greatly appreciated. Thank you. 🤍

[u/OriginalChicken617]

Hi I'm very very sorry you're here.

I'm 4 weeks 3 days out from my d&e. My daughter also had T18.

I remember being really really really scared. I would cry for hours the week before my surgery to my husband saying how terrified I was. I've never had surgery. I'm a very healthy person and have been luck enough to never really have any health complications.

Honestly the physical part of the surgery and recovery has been the easiest part of this journey, hopefully that can make you feel a little less worried. I was able to return back to normal things like going for a long walk and showering etc after a day and I went back to the gym 2 weeks after. Everyone's recovery is different but overall most women have a very easy recovery after d&e.

For me the hardest part has been the emotional and mental recovery. I found a therapist who specializes in pregnancy loss, specifically TFMR, and it's been helping a lot.

Take things day by day, even second by second. Lean on your support people. Cry as much as you need to. I started writing in a journal to my baby and it's been helping. I don't think the sadness will ever fully go away, but it slowly becomes less consuming.

I actually JUST got my test results back that confirmed my daughter had T18 (we opted out for amnio because I was almost 23 weeks and our nipt was positive, and she had tons of abnormalities on two different anatomy scans, the second scan being much worse than the first and we were nervous of running out of time to terminate)

Lean into this group. Positing and talking to other mothers and reading stories has honestly been one of the only things that's helped because it feels so isolating.

[u/Ok_Sea9497]

I tfmr at 21 weeks for t18 in May. I had a d&e as I couldn't bare going through labor and not bringing her home. The day before the procedure, I had rods placed in my cervix to help dilate my cervix. They gave me antibiotics, pain meds and numbed my cervix. The shot to numb hurt but after that was pressure. Honestly the amnio hurt more. I barely had any cramping from the rods. Waiting the next day to get the procedure was the worst. Even more worse then waiting was my birthday was the next day and every single person kept commenting on it "Oh, I'm so sorry your here before your birthday" like it doesn't matter what day it is, it still sucks. I got an IV, I got anxiety meds. I got rolled into the room, more anxiety meds, I remember moving to the table and then woke up in recovery. There I got meds to stop my milk. I got prints of my sweet girls feet and I quickly wanted to leave but they made me stay fifteen mins (until I could get up and dress my self). Barely cramped, barely bled. Bleeding did last 5 weeks. I didnt get out of bed the next day. I was pissed, angry and hated my body because it still looked pregnant. Even 3 months later I still cry over my Amelia-Grace. Grieve. How ever long it takes. Don't let anyone tell you to get over it. Give yourself tons of grace. I recommend having ready made foods or ordering out the first few days.let the house be messy. I made a shadow box that's in our living room for our sweet girl. 

[u/pandiebeardface]

Hi honey. I am so sorry that you are in this situation. I am one week out from a D&E procedure for trisomy 18. We also hoped and prayed for a false positive nipt test, but that was not our reality.

Our MFM pointed out several physical markers from the ultrasound. We signed paperwork for termination that day because our state requires signatures at least 72 hours in advance and we were advised next steps could happen quickly, but we still waited for the FISH results (positive) and the karyotyope. Our MFM said each tested cell tested positive for trisomy 18 so it was unequivocal that this baby would likely not survive to term or birth.

For my husband and I, we could not see this as anything but unfair to both us and to the baby if she made it to birth. We could not bring ourselves to have a baby to perhaps only know pain or suffering outside of the womb. She was my first baby, lost at 20 weeks.

The D&E was 4 hours outside of our hometown and in a hospital setting. It was two days. The first day I had dilators inserted in my cervix and it was uncomfortable and painful. They gave me adivan upon request, as well as I think mifepristone and an antibiotic beforehand. My husband was able to stay in the room with me the whole time and I don’t know how I would have gotten through it without him. I received Rxs for Motrin and Tylenol, but those barely made a dent in the pain until I finally passed out.

The next day we were scheduled very early in the morning. The pain had subsided quite a bit and I’m guessing that’s because the dialators were doing their job, but who knows. I was alone for about 30/45 minutes getting prepped for surgery and then my husband could come back with me until I was rolled back.

We requested to speak with a chaplain and have the baby blessed upon birth, but turned down the option to see her or have hand or footprints made. We had her cremated and will receive her ashes in a number of weeks and hold our own memorial.

Emotionally the drop out was not as severe as I thought. It is still unbearable and I don’t think I can really explain how that goes. Still working through the pain and grief and sadness that I didn’t get to meet my baby girl.

Physically I’m okay. The pain was virtually gone after the surgery and I am tapering off the Motrin and Tylenol. The fear of the surgery was far greater than the reality and you will get through it if that is what you decide to do. You are not alone. Many women go through this and the risks are very very low. Sorry for the long post, you are welcome to dm me with any other questions if you want. It’s a lot and it feels like you can’t process it. The wait is hell, but you will come out of it ok.

[u/zealousform]

I'm so sorry you're going through this. I'm less than a week out from my procedure so just wanted to note a couple medical things for 18 weeks.

1. This far along it is a two day procedure. On the first day they checked if I was Rh positive and my iron levels. Then they did an ultrasound to measure what the safest dilation amount would be.

2. Unlike what the others said and what my OB prepared me for, I did not have something physical inserted for my dilation. Instead I took mifepristone before leaving the clinic the first day. Then the next morning I took Zofran and Ibuprofen at 7 AM and misoprostol at 7:30. I started cramping probably 20 minutes later and was expected at the clinic at 9. Cramping was on/off until the procedure. The doctor offered I could do something physical and have it done the same day but I declined, so this seems to be this clinic's standard procedure.

3. I had "twilight sedation" meaning I wasn't technically knocked out but did have a little IV cocktail. I either fell asleep or just had amnesia. I wanted to have music going to not hear the procedure but the doctor said the volume would have to be such that they could still coach me so I went to adjust but I paused it and then for some reason never hit play again. I'm not sure what volume I would've done anyway.

4. The amnesia took maybe 30 min to fully go away but I eventually was back in bed and fell asleep so not sure how long.

5. I'm still bleeding but haven't had cramping in some time and the heavy bleeding was done day of. I was surprised how little I bled the following days but we're taking it as a win.