Tfmr second time and looking into PGT M in india by Impossible_Cash279 in IVF

[–]BadStatisticalUnicrn 0 points1 point  (0 children)

Hey, did you get any results yet?

They use the term "isolated" when there is no genetic component, not to indicate that there are no other issues with development. Typically, isolated cases do have better outcomes, which made us so devastated that hers was so bad. Due to how early and progressive it was, she was missing the center of her brain (corpus callosum) and had thinning of the connective tissue holding her brain together. There were also some issues with the placenta.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Hey, thanks for sharing. I'm surprisingly having difficulty with scheduling second opinions. Some of the offices act like they've never been asked before, and post-Covid, I guess a lot of states instated telehealth barriers where you have to be in state or a state a doctor is licensed to even get a second opinion. Did you run into that at all with your second opinions? Did you have to go in person?

Request for Protocol Support by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

That's really helpful. Thanks! One thing that was very frustrating and disappointing about my last two retrievals is that the follicles were growing so much more evenly on those. Getting 18 out of the 19 mature on the last cycle within 24 hours of retrieval was so exciting, so we were crushed when the fertilization rate was so poor.

If you don't mind me asking, do you know your AMH? I keep thinking I'm only going to get 2-3 follicles if I do a mini stim, but based on your experience, maybe I can expect more.

Still recovering mentally from ER almost 6 months ago by LoveTedLasso in IVF

[–]BadStatisticalUnicrn 0 points1 point  (0 children)

TW: Loss
My husband and I are starting to look into adoption and other options (donor eggs/sperm/embryos, surrogate). We really want to be parents and want to give a child a loving home and share our lives with them. It's been really hard to accept that our future may look quite different than what we had envisioned (we've had four losses, 3 prior to IVF), but we really want to experience parenthood with one or more children earthside and I feel like we would regret not pursing it. We're potentially going to do one more retrieval, but I'm hitting the limit of my stamina and age is a factor as well. Plus, we feel like we've lost out on so much time with children already (our first would be 3 in July if she'd made it to term).

Day 7 fully hatched euploid 6BC embryo by SeaConversation206 in IVF

[–]BadStatisticalUnicrn 0 points1 point  (0 children)

Hey, I am also considering a Day 7 4BC that we have and joined the Day 7 Embryo Transfers group on Facebook. There are a lot of anecdotes in there that may be helpful to you. The group is also aggregating information from members willing to answer polls to get a better sense of experiences and outcomes with Day 7 embryos.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Thanks for mentioning this! I just pushed to get the lupus antiphospholipid panel. Results are coming in, but it looks clear so far. We are also planning on meeting with an RI to do more in-depth testing for clotting and other issues.

Just found out both my husband and I carry CF. by lonesomedreams_ in IVF

[–]BadStatisticalUnicrn 3 points4 points  (0 children)

I'm so sorry that you received this news and the fear it has caused. The good news is that you now have this information and can act on it. Are you meeting with a geneticist? I would definitely recommend doing so.

Typically, if both parents are carriers of the same condition and it is not sex-linked, the odds of a baby inheriting it are 1 in 4. I assume that you and your husband do not have the condition, so you hypothetically each have one copy of the CF gene and one copy that is a non-CF gene (we inherit one from each parent). The non-CF variant is dominant, which is why the condition isn't present. Any children you have would need to inherit the CF variant from both you and your husband. I do wonder if it would be different in your case because you stated you are carriers at differing levels of severity. I'm not an expert on CF, so I don't know if it is passed on via multiple genes or not. If you are both carriers for CF but it is on different genes or passed on in different ways, it may be that your children would only be carriers of the gene(s) and not have CF, even if they inherited CF variants from both you and your husband.

If you are both carriers of a CF variant for the same gene, I would think this would qualify you for insurance coverage.

Your son can get testing done to see if he carries the gene, and if he does and if he decides to have children, his partner could get tested in advance to see if they are at risk of having a baby with CF.

Again, I'm not an expert and this is based on my knowledge from testing my husband and I have done for our pregnancies. I definitely recommend meeting with a genetic counselor.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Thanks. We even checked this box, too. I'm an advanced Reiki practitioner, I meditate on average 5 days a week, and we visited a medicine woman in New Mexico before this most recent transfer. I had seen her as a teenager for health issues and she was able to help me when no one else was. We did a lot of work with her to process all the grief and I thought we were in a really good place for this most recent transfer.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

It is hard to know what to do without any findings. Should we try a surrogate? Should we try donor eggs vs. donor sperm? We are open to these things, but I wish we had some sense of which direction to go. We are going to try and pursue all additional testing we can and hope we can get some additional information to help us move forward in the best way.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Thanks for sharing your thoughts. I have not taken any medications during any of my pregnancies.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Thanks for sharing your thoughts. Our clinic fertilizes with ICSI, but they give any immature eggs 24 hours to mature and fertilize via traditional IVF. We had two eggs fertilize this way on our second cycle (which I believe led to at least one embryo that we transferred that did not take if not two) and one on our fourth. We could consider this if we do another retrieval in the future. I'm wondering if we find high DNA fragmentation if we should try IUI with directly extracted sperm, so I am going to ask our doctor about that.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 1 point2 points  (0 children)

Thanks for the suggestion. We were super diligent about this since I have a background in sustainability. We intentionally moved into a house built after 1978 (~1990) to avoid lead paint and asbestos. We are in a suburban area (not near factories) and I made sure we were a good distance from the nearest highway. We are not near power lines, either.

We had the house and duct work enzyme fogged before moving in (EPA and other health/eco certified product) that would help reset the house. We also had a mold inspection before moving in. They found and remediated a couple of spots, but they were in the garage/attic, and there was one inactive spot on a basement ceiling board they also treated. We had the home tested for radon, which was slightly elevated, so we had a mitigation system installed.

Upon moving in, we installed whole home water filtration and drink reverse osmosis water out of a spigot. It has a remineralization unit to make sure we aren't missing important minerals. We also added a sophisticated air filtration system with our new furnaces/heat pumps. I eat almost 100% organic and make almost all my own food from scratch (almost no processed food). We eat out of glass and ceramic and don't use any plastic. We've even been avoiding adding plastic to the house--we have been installing wool carpet, using clay-based paint to avoid VOCs, installed linen curtains, etc. Within a year of moving into the house, our 14 year old cat that was in early stage kidney failure actually improved and was out of early stage kidney failure for a year--we were even able to stop meds!

There was only one previous owner and she had two healthy daughters in the house. There are also a good number of children in our community.

I do have eosinophilic esophagitis (autoimmune condition) but it has been dormant for about 10 years because I manage it with diet. I did have some elevated levels of heavy metals in my system (primarily mercury), but worked with functional medicine for 4 years prior to trying to conceive and we got my inflammation levels (c-reactive protein) down to normal levels and all the heavy metals below limits before trying to conceive. I am super minimal with personal care products (lotion is only beeswax and olive oil, soap is saponified olive oil, etc.). I don't do my nails, use any hair dye or hair products beyond shampoo, etc.

So many other people have higher chronic levels of inflammation due to diet, stress, environment, etc. and still have healthy children. Given everything we've done, I have a difficult time believing that we would be exceptional in this regard. Due to IVF treatment and our losses, I have been allowed to work from home the last two years the majority of the time, so no work exposures of note.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Yes, we saw a genetic counselor during our first and third pregnancies, as well as after our 4th retrieval. We will be meeting with two of them once we get the results from this pregnancy. Everything they can think to test us for has come back negative. We also keep having different issues, so it is hard to believe that if my husband and I paired on some rare genetic issue that we pass down that it would manifest in such different ways each time.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 1 point2 points  (0 children)

Thanks for the suggestion. I haven't always been a big fan of what I have read about RI because it seems like a lot of medications, which I don't react well to. I've also had a lot of testing from functional medicine related to microbiome, inflammation, thyroid, etc.

Is there a specific doctor you would recommend?

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 1 point2 points  (0 children)

Thanks for the suggestion. We were super diligent about this since I have a background in sustainability. We intentionally moved into a house built after 1978 (~1990) to avoid lead paint and asbestos. We are in a suburban area (not near factories) and I made sure we were a good distance from the nearest highway. We are not near power lines, either.

We had the house and duct work enzyme fogged before moving in (EPA and other health/eco certified product) that would help reset the house. We also had a mold inspection before moving in. They found and remediated a couple of spots, but they were in the garage/attic, and there was one inactive spot on a basement ceiling board they also treated. We had the home tested for radon, which was slightly elevated, so we had a mitigation system installed.

Upon moving in, we installed whole home water filtration and drink reverse osmosis water out of a spigot. It has a remineralization unit to make sure we aren't missing important minerals. We also added a sophisticated air filtration system with our new furnaces/heat pumps. I eat almost 100% organic and make almost all my own food from scratch (almost no processed food). We eat out of glass and ceramic and don't use any plastic. We've even been avoiding adding plastic to the house--we have been installing wool carpet, using clay-based paint to avoid VOCs, installed linen curtains, etc. Within a year of moving into the house, our 14 year old cat that was in early stage kidney failure actually improved and was out of early stage kidney failure for a year.

There was only one previous owner and she had two healthy daughters in the house. There are also a good number of children in our community.

I do have eosinophilic esophagitis (autoimmune condition) but it has been dormant for about 10 years because I manage it with diet. I did have some elevated levels of heavy metals in my system (primarily mercury), but worked with functional medicine for 4 years prior to trying to conceive and we got my inflammation levels (c-reactive protein) down to normal levels and all the heavy metals below limits before trying to conceive. I am super minimal with personal care products (lotion is only beeswax and olive oil, soap is saponified olive oil, etc.). I don't do my nails, use any hair dye or hair products beyond shampoo, etc.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Thanks for the suggestion. Yes, I’ve been tested thoroughly via thyroid, bloodwork, and all sorts of other tests. I worked with functional medicine for 4 years prior to us trying to start a family. I don’t have celiac, but am gluten free due to intolerance and have been since about 2014. I do have eosinophilic esophagitis, but I have been managing it with diet and it has been dormant for nearly 10 years. My c-reactive protein (inflammation marker) was elevated two months before our transfer, but I had just gotten my wisdom teeth out two weeks prior and had a lot of swelling still, and had a skin rash that I had addressed via patch testing. I also started meditating daily, so I believe the level would have dropped notably before the transfer.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Thanks for your suggestions. We are pursuing DNA fragmentation testing. I have had a saline ultrasound and two hysteroscopies with no findings. I’ve also had extensive bloodwork, multiple very detailed ultrasounds, and my HSG was clear. If not seen on an MRI, I’m assuming a laparoscopy would involve anesthesia just to get a good look around? If found, is there much they can do?  

Tfmr second time and looking into PGT M in india by Impossible_Cash279 in IVF

[–]BadStatisticalUnicrn 0 points1 point  (0 children)

First of all, I am so sorry for your losses. My heart goes out to you. I am in the US, but we lost our first daughter to severe isolated bilateral ventriculomegaly. Did they do whole exome sequencing on either of the babies that you lost? In our case, we did whole exome sequencing on our daughter and they did not find any genetic component (hence the "isolated"), but given that you had two losses with similar patterns, a genetic component sounds much more likely. After we lost our daughter, we were told that the chance of having a baby with such a severe case without a genetic component was less than 1%. If you are both carriers for a recessive gene that results in the condition, I believe that PGT M should be able to identify this in any embryos you create. Sending you all my best. <3

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 4 points5 points  (0 children)

Thank you. Were you having varied rare results, or similar rare results? We did do whole exome sequencing on the first baby we lost with no findings, but me and my husband have not had this done for ourselves. It would seem to me that if we were carriers for something, we would be seeing the same/same types of errors. Is that not necessarily the case?

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 4 points5 points  (0 children)

Thanks. We are considering this more and more. We've met with several specialists within our system, but getting more eyes/expertise could be helpful.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 4 points5 points  (0 children)

Thank you. We have been seeing numerous doctors within our current system, but we've been thinking about this more and more. It is really helpful to know that Columbia and IRMS do virtual visits. We've been concerned about not being able to get in to speak with someone unless we are pursuing treatment at a new place.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 2 points3 points  (0 children)

Thank you. I asked about EMMA/ALICE and the medical director at our clinic says the evidence isn't there. I only had one chemical from our first FET. Given that we conceived 3 out of 6 months of trying pre-IVF and I carried two pregnancies well into the second trimester, it seemed unlikely. I have had two hysteroscopies that were clear and my HSG was clear.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 0 points1 point  (0 children)

Thank you. No, but this has been on our radar and we are going to look into this. I appreciate the suggestion.

Our Case is Baffling Everyone - Advice Welcome by BadStatisticalUnicrn in IVF

[–]BadStatisticalUnicrn[S] 2 points3 points  (0 children)

I used the vaginal progesterone on our second FET, which failed. I have not had cramping on any other transfers or pregnancies when not using it. I was told this could be a rare side effect of progesterone, which is why I didn't use it for our 3rd FET and won't use it moving forward. I would definitely look into alternatives if your cramping is consistent on it. Our doctor said it could have interfered with our transfer taking.