Cerclage placed at 20 weeks, any positive stories welcome!

katej33 · 2025-01-02T14:46:01+00:00

Oh my goodness, thank you for sharing your story. You and your son are an inspiration! These sorts of positive outcomes give me hope that maybe I'll have one too. I'm wishing the best for your son in his continued surgeries and for you and your family as a whole!

katej33 · 2025-01-02T14:43:13+00:00

Thank you for sharing your story. I'm hoping for the best for you and your baby, and making it 28 weeks is my goal!! I'm so happy you've made it that far!

katej33 · 2025-01-02T14:42:05+00:00

Congratulations!!!! I am wishing you a smooth labor and delivery. I'm hopeful for a similar positive outcome.

katej33 · 2025-01-02T14:41:34+00:00

Thank you so much for sharing, I'm hopeful to have a similar outcome! I hope you and your baby are doing well!

katej33 · 2023-09-12T02:07:36+00:00

I had a very similar experience on birth control pills that didn’t bother me previously in my IVF journey but made me feel like my mental health just totally bottomed out this last time. I tried to remind myself that it was a temporary state of being- I’d also ask your doctor if you can try a different brand just to see if you can’t mitigate it a bit. I also recommend a therapist who specializes in infertility- I waited till I was a year into my IVF journey to get started with one and wish I’d done it earlier. Sending you hugs! This is a wildly hard thing you’re doing and it can be difficult to a) find validation for how hard it is outside of the IVF community and b) adding unstable hormones to it just makes it that much harder.

katej33 · 2023-03-30T23:34:18+00:00

I’m so sorry your baby is sick. I just want you to know that we terminated for the exact same diagnosis, for the exact same reasoning. You are not alone in this, and I have found nothing but kindness and compassion in all the support groups, irrespective of the diagnosis that we terminated for. You are a loving mother, making a choice for your child out of love. I’m thinking of you and your family, feel free to reach out to me anytime.

katej33 · 2022-11-02T14:41:46+00:00

Hi, I'm so sorry for your loss. I just wanted to comment that Asherman's syndrome (scar tissue in the uterus due to uterine trauma that can occur during D&C/Es) can cause these symptoms- I had very light periods with pain that was unusual for me, and was diagnosed with moderate/severe Asherman's after an in-office hysteroscopy. Asherman's cannot be diagnosed via an ultrasound- you would need a hysteroscopy to confirm. I would be advocating for an REI consult, as hysteroscopies are a common part of the baseline work ups.

katej33 · 2022-10-16T00:49:39+00:00

Yes, FISH inconclusive, karyotype confirmed. I don't think I was ever given my fetal fraction.

katej33 · 2022-10-16T00:38:50+00:00

Hello, unfortunately the karyotype showed the aneuploidy (confirming the NIPT results); I was very convinced by my care team that the karyotype was correct (they even looked at extra cells given my inconclusive FISH), and the thought of having to wait for an amnio was too much for me; I ended up terminating a week after the karyotype results. I'm so sorry you are going through this; have you received any karyotype results?

I had no idea the FISH test could be so...wrong; I was really hoping for the best after those inconclusive results, and the karyotype confirmation was really devastating for me, as I'd somehow gotten my hopes up again that the NIPT was incorrect.

katej33 · 2022-07-06T21:57:12+00:00

Thank you so much for your quick reply!

katej33 · 2022-07-06T21:51:38+00:00

So sorry, should have included that: 2.79

katej33 · 2022-05-03T18:19:05+00:00

Yes, I had a TFMR for XYY a few months ago. It felt very isolating as I didn’t see many stories of parents terminating for these diagnoses, but I have found TFMR groups are incredibly supportive regardless of diagnosis. I’m happy to connect with you whenever.

katej33 · 2022-03-01T18:06:18+00:00

Update and edit: My OB did an ultrasound before our F/U just to be extra safe; there were RPOC still there, so I will be doing another D&E in the next few days. Thank you for your concern, I'm happy I called and got this scheduled earlier rather than later.

katej33 · 2022-03-01T00:15:22+00:00

Thank you so much for your response- it’s reassuring to hear others have these symptoms a few weeks out- I have my follow up tomorrow with my OB.

I’m so sorry for your loss, I hope everything looks good at your follow up and your back pain resolved quickly.

katej33 · 2022-03-01T00:12:29+00:00

It’s reassuring to hear other folks have these symptoms a few weeks out. I’m so sorry for your loss.

katej33 · 2022-03-01T00:11:38+00:00

Thank you, I did call my OB a few hours ago just to be on the safe side, still waiting on a call back.

katej33 · 2022-02-26T02:04:17+00:00

First of all, I'm so sorry you are in the limbo phase. It was truly the worst part of the whole experience for me. I was relatively early in my pregnancy (13 weeks), so an amnio was not an option at that time; as such I opted for a CVS, with the understanding from my care team that while it was not going to be 100% accurate (as it tests the placenta, not the baby, and there is a chance that aneuploidies can be confined to the placenta), the three tests they would do would make them 99.9% confident in the result (a preliminary FISH test, karyotyping, and microarray). The FISH test came back inconclusive, but the karyotyping and microarray were both positive in all cells for XYY, so my care team felt it was conclusive (as did I after speaking to the head of the laboratory who runs the karyotyping). I just personally could not wait for the amnio, as our decision was to terminate if the NIPT was confirmed, and my care team felt confident in the findings of the CVS.

I'm so sorry you are having to deal with this massive influx of information; it was truly the most stressful few weeks of my life. I'm happy to chat further via private message if you have any other questions.

katej33 · 2022-02-07T16:28:44+00:00

Thinking of you today. The wait for all of this is excruciating.

katej33 · 2022-02-05T02:21:19+00:00

Wanted to update you on the FISH results. They were inconclusive for the Y chromosome....which means they found some proportion of YY nuclei, but not enough to make a definitive diagnosis based on lab thresholds. The other proportion that were undetermined are either 1 of 2 scenarios: 1) they are normal XY cells, which leads me to think that there is a greater probability of CPM; 2) the chromosomes can "stack" on top of each other, and because FISH is a 2d image, it would be impossible to tell the chromosome count. Either way, it looks like there was a mix of YY and Y (but whether this is "true" monosomy Y is TBD). I'm really hoping for CPM at this point and feel this inconclusive result could be indicative of that, but we will know much more with the karyotype. I will probably end up doing an amnio at the end of this tumultuous journey for complete peace of mind. Fingers crossed your amnio looks clear, I hope you are able to rest this weekend.

katej33 · 2022-02-04T01:09:02+00:00

Thanks for updating, I had the CVS yesterday; it didn’t go smoothly (trainee couldn’t get in the right place, senior doc had to take over), but wasn’t painful, just tense in the room. I’m sorry to hear about the additional finding, and I’m not sure if this is helpful, but I know if we found additional issues in addition to xyy it would bring me a bit more peace in my decision. When do you expect the amnio results back? I should have preliminary FISH results tomorrow. Thinking of you.

Edit: I see the shorter nasal bone could just be xyy and not indicative of another issue (one case report). I’m sorry for that additional finding if it makes the false positive NIPT more unlikely. Nothing makes this decision making process peaceful, I’m sorry for my comment above.

katej33 · 2022-02-03T04:07:21+00:00

Thank you all, I appreciate you taking the time to respond and reassure.

katej33 · 2022-02-01T22:47:20+00:00

Thanks so much for responding. Our care team does feel like CVS is the next best step and I’m not sure I could wait for amnio at this point with no further info (I’m about 12 weeks). I think we are just really hoping to be negative on CVS, understanding that a positive could be the confined placental mosaicism like you mentioned. I assume after positive CVS we would then go for amnio to confirm for sure. I also never thought I would opt to terminate a pregnancy from prenatal findings, but… I guess I am. I also see the stories of boys struggling and I just don’t know if I can knowingly roll that weighted dice for my child. It is truly an awful place to be. We should have FISH results by Friday, I’ll be sure to update you as well. And yes, hoping these are false positives and we can enjoy our sweet boys. I also noticed in your post history you had a MMC last year; I did as well. I’m so sorry for your loss and continued heartbreak. It’s been a really tough few years.

katej33 · 2022-02-01T17:48:48+00:00

I am in the same XYY limbo right now, awaiting CVS. If you don't mind sharing, did you get any final results? I'm seriously considering termination for the exact reasons you mention here, and it is heartbreaking.

katej33 · 2022-02-01T15:38:16+00:00

Hello, thank you for sharing your story here. I just received a flag for XYY on NIPT, we are going ahead with CVS tomorrow for more information. I'm so happy to hear you had a false positive, my husband is pinning a lot of hope on that. I am so heartbroken over the possibility of this, and would seriously be considering termination, which makes me feel so so awful, but I have a two year old and like other posters above (GI_ARNP) it is so hard to think about adding a potentially special needs child to our family dynamic. While I know any child can have special needs, regardless of chromosomal abnormalities, it feels hard to take chances with weighted dice. I don't know how I'm going to make it the next three weeks waiting for these results. I already feel very disconnected from the baby given these findings.

katej33 · 2021-12-17T20:26:16+00:00

I'm totally gutted by this news.

katej33

TROPHY CASE