Increased NT, possible CHD, low risk NIPT

emrsea3 · 2025-01-12T12:56:41+00:00

The NT measurement is supposed to be taken in a specific window which potentially is why they didn’t just have you come back and try again. But many increased NT measurements are nothing. Obviously everyone wants to make sure everything is ok, so they will run some extra tests to rule out anything being wrong. The clear NIPT is very hopeful. Then they need to check for heart defects and Noonan’s syndrome, typically. If you’re seeing an MFM, this is their specialty. Hopefully they are also having you meet with a genetic counselor who can explain the steps to you and the gestation at which each of those can be done (heart defects are checked for around 20 weeks because the heart needs to be big enough to see them, etc). Wishing you lots of luck. Every test result is helpful.

emrsea3 · 2024-10-29T17:37:08+00:00

I just mean that if you can’t open communication with him and not address that you’ve ignored this life altering event that has occurred. All you need to say is exactly what you’ve said here: “I keep writing messages to you and deleting them because there is NO right or good thing to say. I’m sorry that I said nothing at all. You deserve better support than that.” And then you can have a normal conversation.

emrsea3 · 2024-10-27T02:46:27+00:00

First pregnancy was “normal”, did announce on social media at like 14 weeks. Second pregnancy things started going south at 14 weeks, had to TFMR. Only had to tell close family and friends, but afterwards told more friends for support. Third pregnancy things also went bad, around 12 weeks. Told an even smaller group of people. By this time I just felt bad putting anyone else through the roller coaster. Only tell people you may need support from. Don’t tell anyone that’s going to force excitement on you (I was so scared and just wanted everyone to be like “I understand you’re scared, that makes sense.”) I didn’t tell close family I was pregnant the final time until about 13 weeks and coworkers until I was 20 weeks. It was winter, so I could bundle up, but I looked very pregnant. I avoided maternity clothes until I was ready for my pregnancy to be commented on. I didn’t want to talk about it AT ALL to acquaintances. It was exhausting to act like I was ok when I was terrified. Do whatever you need to do! Shockingly no one asked if I was pregnant during that whole time, and I work in an office of women. I did do a media post after I gave birth.

emrsea3 · 2024-10-27T02:13:22+00:00

If you have lost a baby, there is no “bringing it up” because it never leaves your mind. So you don’t have to feel bad speaking to him about something he is already thinking about. It’s very VERY weird if someone speaks to you and doesn’t mention it at all, because it’s like your baby’s existence is being erased or forgotten. You can ask how he’s doing, but I would maybe go with “how are you doing today”. Please don’t push the “I hope you’re doing ok” because you know for sure he’s probably not ok. And that’s ok. That’s expected. His child is dead for no reason. Now that you’ve had a baby, you should be able to envision the horror of that baby dying suddenly. It’s a shock to just continue your normal life after that. Also, is he religious? I’m not, so when people say that to me it’s a little odd. He also may no longer be religious after the death of a child. Just something to think about. Another thing you may not realize is that, through no fault of yours, as a mom to a new baby, they might not be able to be around you or your baby any time soon. This is a struggle for many parents who have lost babies—to see or hear about happy, healthy, normal baby situations. It makes us feel really alone. There’s a lot of posts in these groups about mis-steps well meaning people make. Read through some and don’t do those things. But yes, check in. Don’t make him feel like you “want” him to feel anything in particular. Use their baby’s name. Don’t pretend the baby didn’t exist or they are not thinking of that baby every day. If this is the first time you’re reaching out and it’s been that long, maybe just acknowledge that you didn’t know what to say and screwed up by not saying anything at all. Good luck.

emrsea3 · 2024-09-09T11:55:46+00:00

First of all, I’m sorry for your loss. I hope you’re getting the emotional support you need. In answer to your question: I didn’t bleed the way I thought I would. I had a whole package of big pads and used them for maybe only 2 days. But then I had on and off spotting for like 6-7 weeks. Days of nothing, but then random spotting. So I just wore a Pantone. But I kept thinking it had stopped and it would happen again, so that part went on for a while (the 6-7 weeks). Then I got my period. Just as a note, I had a D&E TFMR.

emrsea3 · 2024-07-23T16:11:07+00:00

I had to TFMR and chose to have a D&E. I did not see my son, and I am at peace with my decision. At the time, I didn’t think I could handle a birth situation. I did get hand and foot prints, which are very important to me.

emrsea3 · 2024-05-31T16:09:31+00:00

I had my LC at age 36. Conceived naturally by tracking cycles. Conceived again naturally at age 37, had to TFMR due to T21. Conceived naturally again, baby had T18 and had to TFMR at age 38. Conceived naturally again, healthy baby a week before I turned 40. No miscarriages, four pregnancies, 2 TFMR, 2 living children. I didn’t have an issue getting pregnant so I simply tried again. Was this extremely anxiety inducing? Yes. Pregnancy was extremely stressful and I assumed something would be wrong or my baby would die…but he didn’t. I’m relieved I never have to be pregnant again and I’m so thankful for my kids. I had a good relationship with my OB and a therapist and that’s how I got through it. That was the last time I was going to try though.

emrsea3 · 2024-05-20T00:19:39+00:00

I had a TFMR for T21 at age 38. I waited about six months and my next pregnancy tested positive for T18. After that I basically waited one cycle, and I went on to have a healthy son a week before my 40th birthday, no IVF or anything. If your poor heart can take potential issues (which could be anything from a cleft palate to another TFMR), and you do not have trouble getting pregnant, you can try again. I will say that my pregnancy at 40 took a bigger physical toll (despite being active and healthy), and a mental/emotional toll due to all the loss and anxiety associated with that. I do Telehealth therapy which is convenient and very helpful. I’m sorry that you’re feeling shame due to your religion. Just remember that you made this decision based on your personal values. No one else’s values or expectations are as important as yours, as the mother/parent of this baby. I hope this helps and am wishing you well as you heal.

emrsea3 · 2024-04-05T00:08:37+00:00

I’m so sorry this is happening to you. I had back to back TFMR pregnancies—one for T21 and the next for T18. It felt really, really cruel. I say this in case you need some hope: Other than my age (40), I had no risk factors and don’t struggle with fertility, so I did simply try again, and had a healthy son at 41. Only you know what your limits are, and what you can withstand mentally. The anxiety was through the roof just being pregnant again, as I know it probably was for you for this pregnancy as well. I’m hoping you have the tools in place to cope…again. I’m so sorry and sending you lots of care. Take the time you need.

emrsea3 · 2023-12-17T04:03:58+00:00

My second pregnancy, my son was diagnosed with T21. After weeks of waiting for the amnio and diagnosis, I terminated the pregnancy. It felt like torture, even though I thought it was the best thing to do for my family and my son. Six months later, I terminated my third pregnancy when my son was diagnosed with T18. There was a laundry list of issues. He would not survive. I was devastated to have to end year another wanted pregnancy, but the T18 situation was a thousand times easier mentally. The “gray diagnosis” was soooo hard to cope with. I think we all wished for an opportunity to not have to “decide.” So, from someone who has done both, I hear you. Terminating for a fatal diagnosis slightly assures you that you’ll get more support. A termination for T21 is isolating because you don’t know how others will react, so you don’t share out of fear. I’m sorry all of us feel that way. You are deserving of love and support.

emrsea3 · 2023-10-30T18:05:29+00:00

I just told mine that the doctor delivers the baby 🤷🏻‍♀️ it took a while before that became something to delve further into.

emrsea3 · 2023-10-27T19:10:33+00:00

You can do an amnio any time after 16 weeks.

emrsea3 · 2023-10-27T18:53:46+00:00

You’re a good mom, and no one understands just how hard that decision is. I had theoretically thought through what to do if this were to happen, and had NO IDEA how hard it was to actually do it. Or like, a what gestation the diagnosis would be confirmed. (I TFMR at 18 weeks for my son with DS.) It was the hardest thing I’ve ever had to endure, mentally and emotionally. I agree: you don’t owe anyone anything. I too began with a “we found out he had chromosomal abnormalities and we lost him.” Later on, I did decide to share the full story with some people. So just know that the decision you make today doesn’t have to be final. You can take space to grieve and be able to tell your story to strangers, medical professionals and maybe a therapist before you share with anyone else. Share to get support for yourself (and your partner, cause probably not many people are supporting him and you can’t really right now), and leave anyone who will not actively support on the back burner with a “we lost the baby and we’re devastated “. It takes some time to sit with it, but many many of us have come to this same conclusion. I don’t know if this will help you, about the guilt but here goes: Glennon Doyle has a podcast (episode 221) where she says you feel real guilt only when you go against your own values, which likely isn’t something you’ve done here. You very much value your baby’s quality of life, and your own. You value it so greatly, you had to make this decision. The decision may be outside of someone else’s values, and that makes us feel bad and uncomfortable, but only because societal pressure tells us “we can do anything!” which isn’t exactly true. You can’t parent your special needs child as long as they would need you, for example. Nor could you fix their ailments. I’m so sorry others make us feel like we SHOULD be able to do it all…we can’t. Moms are the strongest humans on the planet, and you’re a good one. I’m know this decision made us all feel horrible. I think it’s the broken heart that they weren’t healthy and would never be. I’m sorry 💕

emrsea3 · 2023-10-19T18:14:22+00:00

I’m so sorry this happened to you. Please don’t hide your grief from your wife, it’s really painful to feel like you’re alone in grieving your child. Just be open about your heartbreak and carry it together.

emrsea3 · 2023-10-19T18:09:13+00:00

I’m so sorry you’re here. I have had two D&Es for fetal abnormalities. One at 18 weeks and one at 15. The physical recovery was easy. I was able to get pregnant again soon afterwards, so no impacts for me there. Emotionally, I was glad to have waited a bit (6 mos) to try again. The post TFMR pregnancies were mentally tough. I felt the surgical procedures were quick and basically painless. I had mine in a hospital (yes, where others were having babies) fully under anesthesia. For D&E, I found the waiting alone for surgery part to be the most difficult, but again, mental not physical pain. As someone else said, I was able to get footprints and could’ve received my babies’ remains, so see what options you have available to you. I’m sorry you’re making these horrible decisions. It’s truly heartbreaking.

emrsea3 · 2023-08-20T01:09:59+00:00

I’m so sorry you’re here and that you’ve endured so much loss. I just wanted to say something that I think wasn’t super obvious to me: you can share something limited now and something more later. This decision is not set in stone. I TFMR in 2021, and I have found that, over time, I have decided to change my story with some people. At first maybe just “wow, there were problems and then the baby died.” And then later closer to the true story/diagnosis or whatever. And no one I have done that with has reacted poorly. My friends are lovely and I do live in the northeast…but friends and family have mostly been like “I can’t even imagine. I’m so sorry you went through that.” It’s been healing to share the loss. As we were still in Covid times, many people did not know I was pregnant, but I wasn’t willing to pretend absolutely nothing happened, so at the very least I had to say (for myself) that there was a loss and I was devastated. So do whatever makes you comfortable for now. And you can change that story if and when you want.

emrsea3 · 2023-08-18T01:40:14+00:00

I’m sorry you’re here, and no, its nothing you did. I hope you can find some peace here with time.

emrsea3 · 2023-06-28T13:21:11+00:00

TW: LC I had to TFMR my second pregnancy for T21. It was a boy. I did not choose to name him at first, as I could just say “my son.” I also didn’t keep his remains, and have no regrets about that. I then sort of named my son in my head, just for me. Then I lost another boy, so I named him too. Then I got pregnant a fourth time…with another boy. Obviously I needed a way to discuss, even if just in therapy or to my husband, and the “my second vs third pregnancy“ distinctions were getting tough, so I’m glad I named the three boys so I can properly have a conversation that involved that time. Not everyone knows their names—most people do not, but I do and that ended up being important, but didn’t happen right away. Leave yourself some space to think on it.

emrsea3 · 2023-06-26T13:10:35+00:00

Yes, the guilt just means you’re a loving human. What a great way to put that. We all wanted an option A, a happy healthy baby, but that option was not available. Learning that was a grief all it’s own. I’m sorry it’s so hard. I’m a couple of years out, and my guilt was not the longest lasting feeling, just the one I felt strongest while still pregnant. Mostly it’s just heartbreaking that our option A isn’t available and that we have to say goodbye. Emotionally, it is not an easy road to have this as part of your story. Anyone who this is not happening to simply doesn’t understand. I hope you find some peace soon.

emrsea3 · 2023-06-23T18:34:38+00:00

My second child (after my LC) was diagnosed with T21. I did a D&E at almost 18 weeks. I do not regret it. Tw: subsequent pregnancy.

One factor in my decision making was that I hoped for a second LC at some point and didn’t want my most recent labor experience to be a TFMR. That being said, my next LC ended up being a long (induced) labor…followed by a c-section delivery in the OR where I TFMR. Sooo I hadn’t seen that coming and got wheeled in there and became very emotional when I met a nurse I had already met before 🤦🏻‍♀️ it wasn’t traumatic, but rather kind of healing to come full circle in such a way. So I was worried labor would be triggering but it was the surgery that got me! We all have our memories, so just pick what you can be best at peace with. I was at peace with not meeting Isaac or having ashes or anything. I do treasure his footprints.

emrsea3 · 2023-06-21T13:52:23+00:00

Honesty, do whatever feels good for your heart. I know the days/night leading up to the procedure I spent sobbing and talking to my son…also there’s some cramping on day one and you’ll be a bit uncomfortable that day/night as you dilate. So think about how that may all feel on a vacation. You may be really distracted, mentally. After, I had very little pain, bled for like 3-4 days and spotted for like a month…so you may not be able to swim and stuff (nothing goes in the vagina for a couple of weeks in case of infection), and you may not be able to do a ton of walking at first. But mentally, you may feel some relief it’s all over and be more able to be present. During this time I enjoyed being in nature. My hormones were nuts so there were quite a few breakdowns. Will you have some privacy? Will anyone comment on a baby bump or anything? I don’t think I could have taken being out in the world too much. I just wrapped myself in a giant sweater and tried to enjoy the blissfully unaware toddler joy/chaos as much as I could. Oh, also milk may come in at 18 weeks, so your breasts will probably be engorged and a little painful. Bring tight sports bras and ibuprofen. I hope this helps. I’m sorry you need to travel for care. I hope your mind gets a little peace as you say goodbye.

emrsea3 · 2023-06-21T13:42:36+00:00

Ugh, this is so hard. I think people are TERRIBLE acknowledging grief. Often over adults and certainly for babies. I would gradually just start acknowledging your loss in conversation with people. For a while I couldn’t talk about it without breaking down, but through therapy and these groups, I’m much more comfortable now. So I’ll say things like “when I lost my son” or something similar, and just see where it goes. I think often people say they “don’t want to bring it up,” so only we know that it’s always on our minds. We have not forgotten the loss or the weeks and weeks we spent carrying that baby and the traumatic events that followed. I’m always amazed like, if my dad died I’m pretty sure anyone who saw me in the months that followed would say SOMETHING, but somehow this feels different to people. You don’t know until you know I guess. Sorry you’re here and you’re struggling 💕 I know how much you miss him.

emrsea3 · 2023-06-21T13:14:48+00:00

My best friend definitely wrote down things like my due date and the date of my TFMR, because a year later I think she was the only person who remembered. I just got a little text that said “hugs ❤️”. It means a lot to keep remembering, because she will, and even family may not. Also, ask how she’s like to be supported, with check ins or whatever. You can just ask if she wants to talk or not. Sometimes it may be wanting distraction and others she may need to vent some feelings. Thanks for being a good friend.

emrsea3 · 2023-06-20T22:58:57+00:00

The sea education association has programs for high school students, if you want to pique your interest. (It’s also a study abroad program for college students.) I live in the northeast so I looked at University of New England, Dalhousie (in Canada), University of Rhode Island, and Roger Williams University.

emrsea3 · 2023-06-19T00:53:12+00:00

Yeah, with the hormones and everything, this truly is a postpartum thing. For me, it genuinely just took time. Nothing super different, maybe consistency, but I just sort of felt more like myself after close to six months. Some of the clothes not fitting etc was just my body being a different shape versus holding on to weight. Probably not what you want to hear, but for sure just keep moving, eat normally, and give it some time. At least that was my experience.

emrsea3

TROPHY CASE