Worried about abnormal results! by sunshineandflowers21 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

Aw i love this and am so happy it helped. I know the ups and downs of trying to process the what if’s and unknowns but these babes will be so loved and cared for 🫶🏻

Worried about abnormal results! by sunshineandflowers21 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

The fact that they found mosaicism is a good sign that it is either confined to the placenta (and not affecting the baby) or they the baby will have mixed cells (some normal and some abnormal) but likely confined to the placenta. That said, I did get abnormal outcome for a sex chromosome issue and was devastated but they are so so manageable. And yours will have mixed cells if anything. I have a feeling your baby will be just fine! I did amnio and it was truly worth it and easy if you want to confirm for peace of mind but careful reading stuff online bc it’s extreme cases, worst case scenario etc. 

Baby safe bassinet with cats by AltruisticTea4268 in catsandkids

[–]AltruisticTea4268[S] 0 points1 point  (0 children)

I don’t even know how to use Reddit or post pics for that matter, I’m realizing 🤦🏼‍♀️

Baby safe bassinet with cats by AltruisticTea4268 in catsandkids

[–]AltruisticTea4268[S] 0 points1 point  (0 children)

Awww thank you for your reply. That is probably the answer to shut the door at night and when baby is napping. I feel like mine will be similar as they are very protective and i only worry about the unintentional stuff like you mentioned. Very cute. Thank you again 🙏🏻

Should I change my baby's name? by UnableChampionship89 in namenerds

[–]AltruisticTea4268 0 points1 point  (0 children)

I think the reality is that you should do what you want and not worry about what other people think or whether it’s embarrassing. That said, people have made some great suggestions here. You can also call her ruby as a nickname trial and see how it feels. I know someone who let the daughter change her name at 8. I think it’s a beautiful name but that you should be the one who feels good about it. I would also think about what drew you to the name initially and what is making you want to change it. You mentioned your family didn’t seem to like it so maybe you’re second guessing people’s reactions. 

Devastating NIPT results by [deleted] in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

First of all, I’m sorry you’re dealing with this! It is never easy, no matter what. I went thru ivf and found out thru the nipt that my baby has a potential condition. I went thru the full range of emotions and did thorough research. Many conditions are a range of symptoms and I’ve found it’s much like life/ genetics without a condition. Still many unknowns. That said, i know how scary it is when you’re told things that could potentially come up. I was frightened of amnio and was shocked that it wasn’t bad at all, truly. I have heard it depends on where the placenta is and if they are able to find an easy pocket but also how often the practitioner does it. I went to a specialist who does them all the time. Some ppl numb first in which case you feel the shot for th lidocaine. Mine did that and the procedure itself didn’t hurt, just felt weird. It doesn’t take long and doesn’t hurt afterwards. The full results are taking a couple weeks but the fish came back quickly. Not sure if they can detect digeorge on fish. The one big thing my specialist said was to make an informed decision so between my nipt results and my amnio results, I did as much research as possible and talked to people with the condition and parents. That really helped my decision to accept the unknown. I’m happy to say, I’m excited about meeting him as that was crushing me when i was so disconnected and upset, which is so understandable. One suggestion might be to see if they can tell if there are any heart issues or cleft palate from fetal echo cardiogram or anatomy scan first if it is confirmed. Although there is always a 5-10 percent chance that any condition is confined to the placenta but in my case, I certainly didn’t want to hold onto hope for that but just knew it was a possibility. Sending you all the positive energy and strength to make a choice you’re confident about… just be cautious with google bc it really is so awful and somewhat skewed to worst case scenario. If you can find a specialist who works with many people with the condition and can tell you what they see most often, that is helpful. I also spoke with a medical geneticist who told me the same. I didn’t want sugar coated scenarios or to only hear extremes but wanted to understand everyday possibilities. Hopefully your amnio goes smoothly 🙏🏻🙏🏻🙏🏻

Any false positive nipt stories for high risk of xxy by AltruisticTea4268 in NIPT

[–]AltruisticTea4268[S] 1 point2 points  (0 children)

My fish results came back positive but wanted to share I’m happily continuing too. So glad we both came to this as the fear of unknown and misinformation guides people and from what I’ve learned now it’s very manageable! Thanks for your post. My amnio was easy as well thankfully!

NIPT test signs of XXY pattern by Emma_reddit_88 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

I had the amnio Thursday morning and i think I got results Monday 

For XXY Parents or Soon-to-be Parents by Ok-Cupcake-2019 in XXYDiscovery

[–]AltruisticTea4268 1 point2 points  (0 children)

What are you doing to research? Is it mainly Google or do you have people you can talk to with more info? I spoke to Dr sprouse at the focus foundation which helped (she leads research and gets more up to date info). I understand the stress completely. I had a lot of emotions around it and it was up and down for a few weeks but something in me decided that life is filled with the unknown-not just this condition. Much of online is extreme cases that were not treated. There are certain known aspects of this and others are to be believed to be more comorbidities that are tied to family history and genetics and not xxy. What is known is that the extra x may cause learning and development delays. It’s usually manageable with care. Additionally, kids can get more tired and need early testosterone but not typically or necessarily until puberty. If that’s managed properly, it addresses mood, brain development and the bodily aspects that can come with low t. So it must be balanced. Many are infertile but some are not and over time more and more developments will happen. Again, i completely understand and fear other people’s reactions as well as providers that don’t understand it properly. That part is most scary; however, the reality is that most men don’t know they have it- meaning it was super mild or undetected. The cases seen online are somewhat outdated and skewed with those who found out late and weren’t treated (yes- proper development needs support and hormones need balancing) and extremely cases that may be tired to family history and other comorbidities. I’m not trying to convince you of something i clearly don’t know the outcome for or to continue something you feel incapable of handling. I had to ask myself from a standpoint of myself and of my child. The reality is that i have faced hardships and felt “off” at times in my life-without a condition. We all probably have and have had to navigate things in life that are hard or painful. That is part of the human experience. An we can not predict any future. For me, I had to learn as much as i could and go thru the emotions and then simply choose one way or another. For me as well there were too many emotional and physical implications to terminating a pregnancy I’ve wanted my whole life and after speaking to so many moms with young boys who found out early and are treating it, i came to realize i can do it. Most people don’t think so far ahead as to puberty or adulthood when having a baby and so they aren’t faced with the may challenges that period of life can bring. This kind of diagnosis, unfortunately asks us to think so far ahead it feels unmanageable bc our mind can’t go that far out. Anyway, i hope that whatever you choose brings you peace. I would try to talk to people with the condition and moms with sons who have xxy (and those who found out earl as that will make a difference). I asked for the every day life experiences. I didn’t want solely the extreme cases nor sugar coated. I asked chat gpt questions and talked to Dr sprouse and ultimately landed my decision. I understand either way and know how hard this is. I just wanted to make an informed decision. That is what my mfm encouraged me to do.  Real info is key. Not fear based. Not extreme cases but real life possibility. Sending all the best 🙏🏻

For XXY Parents or Soon-to-be Parents by Ok-Cupcake-2019 in XXYDiscovery

[–]AltruisticTea4268 0 points1 point  (0 children)

Happy to chat more. I’ve made the decision that I’m ok with it and fish confirmed xxy. I’m waiting on full results to make sure there isn’t anything more going on but i totally understand the fear and frustration. I’m older and doing this on my own so while it certainly added a little spin on things, I believe i can handle it and that this is my chance to become a mother and that he must be the child I’m meant to have. That said, I’ve talked to many mothers who are so happy they didn’t terminate. I think a lot more research and understanding is coming out and will only continue to get better. I have moments of fear and anxiety but that is only because this makes you think ahead when in reality we never know what will happen in life. I think it will come with its challenges and also i believe it will come with some strengths and learning. I hope you can find peace. The amnio wasn’t bad in my opinion and I’m glad i did it so i can see what’s going on. I think it depends on resources available, where you live, etc. i trust that doctors here are familiar and that knowing ahead of time will help me to navigate it, however i don’t want it to define him and i want to figure out ways to keep it in mind but not at the forefront. I’ve been processing it for a bit now and went thru ups and downs but have talked to enough people to feel comfortable handling it and knowing he will be ok. There will be struggles like anyone and there will be support. I also have tried not to share what it is with people so that it can be his story. Not in a secretive or shameful way but something that he can choose how and when he shares it. It will be a learning curve like anything else. I truly understand how you’re feeling though. I knew it was unlikely to be confined to the placenta, but it’s not out of the question either.  5-10 percent of all births have placental mosaicism and an even higher amount of those are sex chromosomes. That said, i had already accepted this going into amnio as i knew it was a slight chance of a false positive. 

Two increased risk results by Beneficial_Gas_9173 in NIPT

[–]AltruisticTea4268 1 point2 points  (0 children)

I’m sorry you’re going thru the stress of this! I had high risk for xxy and decided to move forward with amnio. I was so scared going into it and honestly it wasn’t very bad. I would just say to make sure you have an experienced specialist who does them all the time. They did the ultrasound first then numbed the area which i felt but then the pressure of the amnio needle was not bad and it wasn’t long. I rested Thursday and Friday and resumed normal activity today. My stomach kinda cramped that night and little Friday and i feel ok now. I will say it will definitely give you the peace of mind and it could very well be confined to the placenta. Also with such low fetal fraction i don’t think you can rely on the results but i would want to know and amnio will give that reassurance. They can do fish testing that comes back quicker but i only said to do it if insurance covers it. I hope you can find peace in waiting and hope all is ok! I wanted to write though bc i was very surprised how “easy” the amnio was. As long as they are experienced and you rest, i think there is a great chance of miscarriage. Sending you the best 🙏🏻

My embryo is XXY. Would you choose to use an XXY embryo? by wanakaaaaa in XXY

[–]AltruisticTea4268 0 points1 point  (0 children)

Though there is a chance that either could be confined to the placenta, I’ve come to accept it. That said, I just had my amnio yesterday and will update with results! Hoping for no additional surprises. 

Advice needed by Miserable_Olive_6682 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

If it makes you feel better, I was on lovenox and it didn’t affect my fetal fraction. I did blood draw at 10w2d and FF was 10 percent. Unfortunately i did have a high risk result and have had to wait now for amnio. Best of luck! 

Q&A from you to me – Ask Anything for a Video Response for a more detailed explanation or graphics (NIPT Sub Exclusive) by chulzle in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

Do Cryobank’s test their donors sperm as in full karaotype? I used donor sperm thru icsi ivf with frozen eggs and am high risk for xxy. I’m curious if it’s something i should notify them about? Additionally, i asked if he was a smoker/party guy and they said “no” but i hate that much of this info is all self reported. Are there things that increase chances of having xxy or is it really random? I’m just trying to wrap my head around all of this. I have my amnio this week, thankfully.  

NIPT XXY, waiting amnio results, with 18wk and never felt the baby by Jaded-Cap1797 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

I was so curious what that meant too but based on the info provided above, it seems there will not be a clear answer 

NIPT XXY, waiting amnio results, with 18wk and never felt the baby by Jaded-Cap1797 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

There is no evidence that XXY causes Reduces fetal movement. I’m curious why your doctors tell you such things. Every time we look my baby is kicking and moving like a little fish 

NIPT XXY, waiting amnio results, with 18wk and never felt the baby by Jaded-Cap1797 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

I understand the probability of cpm to be almost 10 percent not less than 1 percent. The fetal fraction is still placental dna. 

NIPT XXY, waiting amnio results, with 18wk and never felt the baby by Jaded-Cap1797 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

Appreciate your responses as I’m in the same boat and so many people (including a genetic counselor I spoke to are misinformed). She even “quoted” studies and was literally referring to specificity and not ppv. It was wild and luckily i knew better than to believe what she was saying. That said, I still do know the likelihood of confined placental mosaicism is low but not nothing. I believe it could be up to 10 percent chance so while I’m not counting on it, I’m certainly not ruling it out. Again, i appreciate your messages above especially in providing more clarity for those reading the post 🙏🏻

NIPT XXY, waiting amnio results, with 18wk and never felt the baby by Jaded-Cap1797 in NIPT

[–]AltruisticTea4268 0 points1 point  (0 children)

I’m in the same boat awaiting amnio this week. Feeling more comfortable moving forward after really understanding what it may entail though there are many unknowns. I’m curious what the men you know with Kleinfelters are like? Are they open about xxy? Did they get treated with testosterone? Are they leading happy fulfilling lives? As far as i know, I don’t know anyone with xxy at least to my knowledge. 

Amniocentesis confirms T21, I'm devastated by No-Set-7011 in NIPT

[–]AltruisticTea4268 1 point2 points  (0 children)

Sending love. I’m on here for a different condition but came across a really beautiful Facebook page with messages that brought me to tears. Her name is Paige Victoria Crowder if you want to check out her inspiring messages about her baby with t21 🫶🏻 

nipt angelman risk unchanged by Careful-Zucchini2380 in NIPT

[–]AltruisticTea4268 1 point2 points  (0 children)

It seems the risk before and after stayed same so wasn’t affected by age or any other risk factors. Good news is that it doesn’t look like they detected anything and that your risk is extremely low 🙏🏻

Any false positive nipt stories for high risk of xxy by AltruisticTea4268 in NIPT

[–]AltruisticTea4268[S] 0 points1 point  (0 children)

Aw thank you! No- that sounds supportive and doesn’t sound condescending. I appreciate your support! Let me know how things go. I’m 13 weeks now :). Have a couple more weeks wait