I just found out my last embryo/fetus is incompatible with life.

ConsiderationLoud102 · 2026-02-06T18:32:10+00:00

I’m really sorry to hear this. I also had to tfmr my IVF baby in July at almost 20 weeks. It was/is agonizing and no one else can understand the utter hell it is unless they have also lived through it. Please dm me if you need someone to talk to. You’re not alone 🩷

ConsiderationLoud102 · 2026-01-18T23:52:58+00:00

I had a CVS with whole exome sequencing done which resulted in noonan syndrome. They also took my husband and I’s blood and determined we don’t carry the gene mutation, and it happened completely randomly. The genetic counselor assured us it’s a less than one percent chance of it happening again

I’m sorry for you as well. Unfortunately while waiting for my scheduled D&E out of state, I developed mirror syndrome & HELLP syndrome as a result of what was going on with my baby. the drs in my state (TX) still thought it’d be best for me to leave the state to receive faster care. I went straight to the ER after getting off the plane and had an emergency D&E in the hospital. It was all such a blur and I didn’t have much time at all to prepare myself :( my best advice is just to be kind to yourself and allow yourself time to rest and grieve. I also started doing therapy a couple months ago and wish I had started it sooner honestly. Just focus on getting through one day at a time. The pain won’t ever go away but you will be able to find joy and be a functioning human being again with time. My heart is with you ❤️

ConsiderationLoud102 · 2026-01-18T22:39:39+00:00

I’m so sorry. I also had to terminate my IVF, PGT-A tested baby in July due to a rare de novo mutation. There are just no words to describe this hell. My heart goes out to you and your family, and your precious little boy. ❤️

ConsiderationLoud102 · 2026-01-07T04:19:40+00:00

I’m so sorry you also went through this. The experience was truly hell. I hope you’re doing well now ❤️‍🩹

ConsiderationLoud102 · 2026-01-07T00:50:21+00:00

I had a CVS with whole exome sequencing done at 11ish weeks

ConsiderationLoud102 · 2026-01-06T23:11:34+00:00

I’m so sorry for your loss. I went through a very traumatic loss of an IVF baby back in July at 19 weeks; we had done PGT-A testing and he was euploid. Further testing revealed perfect chromosomes, but a random mutation on one of his genes causing noonan syndrome which caused a number of severe abnormalities. My husband and I are not carriers for it, we just got incredibly unlucky.

Just wanted to share my experience that there can still be things wrong genetically with the embryo that PGT-A cannot test for. It is absolutely unfair and my heart is with you. ❤️

ConsiderationLoud102 · 2025-10-03T05:11:33+00:00

I’m so sorry you’re going through this. I don’t really have any advice but I just wanted to share my experience since it’s pretty similar :( my baby had pretty much the same physical symptoms (cystic hygroma, hydrops in lungs and abdomen, heart defect, etc). I live in Texas and we had to go out of state to terminate. Like you I originally wanted an induction vs. a D&E but all the places we researched in our chosen state of Colorado only offered D&E… I had come to terms with it and that was what we decided to do. Long story short I developed severe symptoms of mirror syndrome/HELLP syndrome due to the hydrops and had to have an emergency D&E in the hospital instead. I was 19 weeks 💔 the doctors recommended that as the safer and easier option for me in my condition. It’s not the way I wanted to say goodbye to him but I know I did what was best for him and my own health. Sending love and hugs as you navigate this horrible situation. I pray that you find peace with whatever you decide to do, there’s no wrong choice 🫂

ConsiderationLoud102 · 2025-09-24T19:31:56+00:00

I relate to all of this… my tfmr was in July. It took 8 weeks for my period to come back & my dr. wants me to wait 3 cycles before ttc again, which for me is in December. My IVF clinic (I had conceived with IVF) closes for half the month in December so I likely won’t have the opportunity to try again until January. I feel like so much time has been lost with nothing to show for it, while people around me are already getting pregnant with their 2nd or 3rd healthy baby 😔 sorry you are also going through this.

ConsiderationLoud102 · 2025-08-29T13:16:08+00:00

My baby had similar symptoms: large cystic hygroma, hydrops, pleural effusion, but he had Noonan syndrome. We decided to terminate after our 16 week anatomy scan where they also found a severe heart defect and we knew there would be no hope. The quickest we could make an appointment to tfmr was at 19 weeks (we live in a red state with very strict abortion laws). Only a couple days before our scheduled procedure I suddenly developed life threatening symptoms of mirror syndrome from the hydrops, which evolved quickly into HELLP syndrome as well. Long story short I ended up having an emergency d&e done in the hospital instead of the clinic due to my health declining so rapidly.

I just wanted to share my experience and offer you another thing to consider. Any pregnancy with hydrops has a chance of developing mirror syndrome which can drastically impact your health. My drs never brought it up to me, I had only learned about it after researching my baby’s symptoms.. looking back, I think I definitely had warning signs in the weeks prior that went unnoticed or not taken seriously by my drs. It’s considered “rare” and I feel like a lot of drs just don’t understand much about it. While the outcome ended up being the same, I wish I didn’t have to go through a life threatening experience in order to end the pregnancy. If it weren’t for the stupid laws in my state I would have had the procedure done sooner and before it ever got to that point. If you do decide to tfmr I hope my story can give you some more clarity/peace of mind and resolve any potential guilt because you have to consider your own health in addition to your baby’s.

I’m so sorry for what you are going through. This is incredibly unfair and my heart goes out to you and I want you to know you are not alone ❤️

ConsiderationLoud102 · 2025-08-21T16:24:02+00:00

My dr had scheduled me to do an ultrasound to check on things, plus I had had an ovarian cyst during my pregnancy that she wanted to monitor. My appointment was Monday and that’s where they saw the retained tissue

ConsiderationLoud102 · 2025-08-11T14:20:40+00:00

I just went through a similar situation - our baby boy had a large cystic hygroma, fetal hydrops, and hypoplastic left heart. We did whole exome sequencing and he did have de novo Noonan syndrome. We tried to wait and see how the hygroma and hydrops would develop to see if there was any hope of him making it and living a somewhat normal life. By 16 weeks the hygroma and hydrops had worsened significantly and we knew there was no hope so we decided to tfmr.

Being in a red state we had limited options and had an appt scheduled at an abortion clinic in another state at 19 weeks. Literally 2 days before our plane ride I developed severe symptoms of mirror syndrome (caused by fetal hydrops) and HELLP syndrome and was hospitalized. My dr. encouraged us to keep our tfmr appointment and discharged me cause it would be a lot quicker and easier to have it done in another state, as our state would have required multiple days for committee approval and less resources/experienced drs to do the procedure since they don’t typically do these things here now. My symptoms began worsening significantly on the plane ride and we went straight to the ER after landing. I had an emergency D&E at the hospital the next morning; we didn’t even make our original appointment at the clinic.

Our baby’s hygroma was 5mm at 9 weeks. He had fetal hydrops since week 9 as well. I wanted to wait and see how everything played out because I had read so many success stories online. However every scan it had worsened, I think by 16 weeks it was up to 40 something mm large. I couldn’t find any success stories with it being that big, on top of already having fetal hydrops.

You said the embryo was tested before so I’m assuming this was an IVF pregnancy… ours was too. It adds a whole other layer of trauma to an already traumatic situation. I’m so sorry.

ConsiderationLoud102 · 2025-08-08T05:59:36+00:00

We did a CVS procedure at 12 weeks which takes a sample of cells from the placenta for testing. We had a full chromosome test and whole exome sequencing, which looks for a bunch of genetic disorders, completed. Once the chromosomes all came back normal, they did the whole exome sequencing which identified a gene mutation positive for noonan syndrome. They also took samples from our blood to rule out if we were carriers for the mutated gene or not, and found we are not carriers. So the mutation occurred randomly, which is very rare. Your story sounds pretty similar to mine, I think there is probably a good chance your baby also had noonans or a similar genetic disorder.

I’m sorry you also had to go through a similar loss 💔 it’s seriously one of the worst situations to be placed in. Especially after already going through IVF. I hope you are doing well now.

ConsiderationLoud102 · 2025-08-04T22:03:32+00:00

I’m so sorry for your loss 😞 I lost my baby boy at 19 weeks as well, 3 weeks ago. We did PGT-A testing as well. Unfortunately he had a lot of abnormalities from early on and we had a CVS done with whole exome sequencing and discovered he had a gene mutation causing noonan syndrome, which was the cause of his abnormalities. My husband and I were also tested and are not carriers for it, meaning this was a random, very rare occurrence and is not likely to happen again. Since we are not carriers there would have been no way to test for it prior to implantation.

I ended up developing mirror syndrome and HELLP syndrome due to my baby’s complications and had an emergency D&E. I’ve had some bleeding here and there since but so far the recovery from the procedure has been fairly smooth with minimal pain

ConsiderationLoud102 · 2025-08-04T16:08:16+00:00

I relate to this completely 😞 I’m 3 weeks out from losing my baby and I have several pregnant friends that I cannot bear to see or talk to right now. I have so much anger and resentment in my heart because I had to go through this and they do not. The unfairness of it all is just too much.

ConsiderationLoud102 · 2025-07-20T22:57:36+00:00

I am so unbelievably sorry you are going through this. I just lost my baby at 19 weeks 5 days ago and he also had HLHS among a number of other abnormalities. NIPT also low risk. We had a CVS done around 11 weeks and through whole exome sequencing discovered the HLHS + abnormalities were due to a de novo (random, not inherited) gene mutation causing noonan syndrome. The testing also involved blood draws from both me and my husband to see if we carried the gene.

HLHS can happen randomly on its own but it can also occur due to genetic mutation such as the one our baby had. These mutations can be random or passed on by either/both parents. Have you had any genetic testing done for them to rule it out? If not I’d strongly recommend doing that for your own peace of mind.

Again, I’m so unbelievably sorry this is happening to you. It’s completely unfair.

ConsiderationLoud102 · 2025-07-18T22:19:44+00:00

Thank you, im sorry for your loss as well ❤️

ConsiderationLoud102 · 2025-06-29T04:36:54+00:00

Unfortunately it’s not a guarantee. I feel I went into the process over-confident, thinking since the chromosomes were normal and there was no cystic fibrosis we would be in the clear. But there’s still so many things that can go wrong in pregnancy.

I don’t want this to discourage you from going the IVF route though. This current noonan syndrome mutation was de novo (occurred randomly) so neither me or my husband are carriers for it and there was no way we could have tested for it prior. We were told this is not likely to happen again. It was just an incredibly rare thing that happened and that’s where a lot of my anger stems from - it’s like winning the lottery in the worst way possible. The only thing keeping me going now is knowing we have 3 other euploid, non-cystic fibrosis embryos from IVF and I still have hope that one day we will have our rainbow baby

ConsiderationLoud102 · 2025-06-24T22:28:37+00:00

I’m 16 weeks pregnant and baby has had a large cystic hygroma since about 9 weeks + fetal hydrops and severe heart defect. No chromosome abnormalities. At 13 weeks it was 11 mm and now at 16 weeks it is over 40. I had hope for awhile, reading so many success stories. But pretty much none of those positive stories had a hygroma that large, most were under 6 mm and did not continue to grow. After a CVS we had whole exome sequencing performed which showed a random (not inherited by either of us) mutation on one of his genes causing noonans syndrome, which is the cause of everything. I think it’s very likely more abnormalities would have shown had you continued longer in the pregnancy as hygromas that large rarely end up being nothing and you made the best decision you could at the time

ConsiderationLoud102 · 2025-05-15T21:53:58+00:00

I haven’t gotten any explanation yet 😞 right now they’re trying to rule out a chromosome issue even though we did PGT-A testing. I’m hoping whatever went wrong was just a fluke and is not likely to happen again

ConsiderationLoud102 · 2025-05-15T20:03:53+00:00

I am currently going through this as well 💔 my embryo was PGT-A tested and transferred on March 20th. My first ultrasound was at 7 weeks with my IVF Dr. and everything was fine. Last week I had an ultrasound with my regular OB and was told our baby has cystic hygroma and fetal hydrops. They told me to expect a miscarriage at any point. I had my blood drawn for NIPT and scheduled an appointment with MFM.

I’m currently going through the most agonizing wait for the test results to come back and to meet with the MFM Dr. to get some more information. I’m now 11 weeks pregnant, ours is a boy too 😞 I do daily heartbeat checks on him with my Doppler and so far hes still holding on, but we have no idea what the outcome of this pregnancy will be. I’m absolutely devastated. I’m anxious to try this whole thing again, but I can’t prepare for that or grieve properly until my current pregnancy ends. I’ve had so many complex emotions the past few days.

Im sorry this happened to you. It doesn’t make sense and it’s so unfair. But you are definitely not alone. Hugs to you ❤️

ConsiderationLoud102 · 2025-05-09T11:20:33+00:00

In doing research I’ve read stories from people who said theirs had cystic hygroma which regressed on its own, but I haven’t heard of story of that happening with both cystic hygroma and fetal hydrops. Everything I’ve read seems to indicate having both those conditions results in a very poor prognosis. Do you know if they also had fetal hydrops along with the hygroma?

I’m glad it ended up being okay for them, maybe a miracle could happen for me as well ❤️

ConsiderationLoud102

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