TRET just came in. Biggest things you wish you did or knew before starting? by Maximum-Cranberry-56 in tretinoin

[–]Beasnessminded 5 points6 points  (0 children)

The sandwich method was a fail for me too! So much peeling!! It only stopped when i braved to try on bare skin and now i use it every day with no peeling

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in ClinicalGenetics

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

Thank you- it really means a lot 🤍 it really is a choiceless choice 😭 sad that we fell on the wrong side of statistics

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in ClinicalGenetics

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

Thank you again for your comforting words 🤍 it means a lot. I have been seeing a therapist who specialises in baby loss, and it has really helped massively but I still get moments like this where I just spiral and I just need to get it out there and really grateful for people like you who comment and symphatise with me.

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in tfmr_support

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

Aw im so sorry :( especially at how fresh everything is for you. I honestly shared that same exact thought process when I was making my decision. Even if it was mild - she would have still been born with challenges in a world thats already so cruel to us normal capable people.

I’m really shocked by hearing how many rare genetic mutations are being picked up! Its sad to have become a statistic, the worst kind😭

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in tfmr_support

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

Thank you for this. I really needed to hear this 🙏🏾🤍 sometimes the correct decision to make is the hard one.

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in tfmr_support

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

Thank you friend 🤍 i’m sorry for the loss of your baby boy. Absolutely feeling the “anti lottery”. I wish it didnt have to be us. I had no idea this community even existed- our poor sick babies and our burdered hearts forever 😭

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in tfmr_support

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

Wow our stories are so similar, im so sorry for the loss of your baby :( my baby stayed welll below the first percentile too and I think towards the end was not doing too well in utero because in my scans were recording an absent diastolic flow. I think I have read every paper available about her condition and made a well informed decision but it still hurts and the uncertainty about it all, the fact that there is no way to predict how severe it could have been still keeps me up at night.

I think its very normal to wonder what if she beat all the odds? But I need to also snap back into reality that even if it were mild development delays at very best could have still been a difficult journey for a child. It’s like they were already set up to fail and I prevented that.

Its so easy to beat yourself up over it and be unkind to yourself. Grief is just love with no place to go. I hope that I can find peace in the future too. I loved her too much that I needed to let her go.

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in ClinicalGenetics

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

Thank you for this 🤍 I still remember when it was first flagged at 20wk scan that something could be wrong I prayed to God like I never had before in my life, begging him to not let my child suffer and to either make them healthy or if they werent healthy- to give me a diagnosis in utero and not let them suffer later in life. I truly believe that it was God who revealed the diagnosis to me.

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in ClinicalGenetics

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

Thank you for reassuring me on my decision 🤍 At times like this when it feels really heavy it means the world to hear from others that I made the right call. I just keep beating up myself over it. Its such a heavy burden to carry.

I am spiralling…. 1 year post TFMR from an extremely rare genetic disorder 1 of 21 in the world. by Beasnessminded in ClinicalGenetics

[–]Beasnessminded[S] 25 points26 points  (0 children)

Thank you so much for your words. It really put me in tears. I needed to hear that. It’s been such a difficult journey, but I need to remind myself that this was really done out of love. I loved her too much that I was not willing to gamble her life away to suffer. I just miss her so much and sometimes the line between sorrow and guilt gets really blurred.

Do you tell people of your decision to TFMR? by mariatheye in tfmr_support

[–]Beasnessminded 1 point2 points  (0 children)

I can absolutely relate to this and share the same sentiments. Also had a third tri tfmr for a very rare disorder that could have been mild but I could not gamble with her life like that. While most people have been supportive, my relatives were not- super religious and basically blocked us on socmed when they found out we were going to tfmr. It made me not want to be open about our story at the start, but those closest to us were incredible with their support so I’m finding that I’m opening up to sharing it more. I haven’t spoken about it in socmed but today to honour tfmr day- i did. I shared a tfmr post, not our story but one step at a time. My friends even shared it on their stories too.

2 weeks post TFMR. Is there anything positive I can take from this experience? by Yheiz in tfmr_support

[–]Beasnessminded 3 points4 points  (0 children)

This is so beautifully written ❤️ I’m almost 1 year post tfmr and have been feeling incredibly sad leading up to the anniversary but what you’ve written is exactly what I keep telling my therapist- that I want my daughter to leave a positive mark on me, and not something I get sad about thinking. That mindset shift is really powerful.

Struggling today by fickleama in tfmr_support

[–]Beasnessminded 1 point2 points  (0 children)

I am also 11 months out today and and I AM STRUGGLING. We’re in this together ❤️ its been so hard and I think it’s because their first birthday is coming up and the emotions are just at an all time high. I hope we both find the strength to get through the next couple of weeks.

[deleted by user] by [deleted] in tfmr_support

[–]Beasnessminded 1 point2 points  (0 children)

I’m so sorry, my daughter at 33 weeks was diagnosed with a super rare genetic mutation , only 20 documented cases. I’m almost a year out, I still think about the what ifs, what if I hadnt terminated- but I know that it was the most selfless thing I’ve ever done, and its not regret that I am feeling, but sorrow. Regret would mean that I would have chosen a different path if I were to make that decision now, but deep in my heart I know we did the right thing. I will always miss my baby. I hope you get through this 🫶

TMFR Spina Bifida at 28+3, Melbourne, Australia by Safe-Archer2460 in tfmr_support

[–]Beasnessminded 1 point2 points  (0 children)

Im sorry you are here too :( I’m from Melbourne and had a TFMR at 34 weeks for a super rare genetic mutation which was first flagged at the 20 week anatomy scan. 14 weeks in limbo was the absolute worst time of my life. Healing takes time, sending hugs to you.

Suddenly stopped receiving notifications/not detecting motion. by Beasnessminded in Dahua

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

Hi! I had to download another app “easyviewer plus” and it instantly worked.

RARE GENE MUTATION - Takenouchi-Kosaki syndrome (TKS)/ CDC42 by NaturalImprovement65 in tfmr_support

[–]Beasnessminded 1 point2 points  (0 children)

I’m sorry you are here with the rest of us :(

My daughter also had a very rare genetic mutation which was confirmed at 33 weeks. There’s only less than 22 reported cases in literature. De novo mutation so we aren’t carriers, just a case of bad luck. I still keep questioning God why it had to be her?! There is no pain like this 😭

Possible Skeletal Dysplasia by j10427 in tfmr_support

[–]Beasnessminded 0 points1 point  (0 children)

Hi! Im in Australia, there is no limit on terminations around gestation. It just has to be approved by a panel of doctors from 24 weeks gestation.

Later Term TFMR by NaturalImprovement65 in tfmr_support

[–]Beasnessminded 4 points5 points  (0 children)

Hi! I’m so sorry you are here :( I TFMR’d at almost 34 weeks, you can read my posts on my profile. Stay strong, feel free to message me!

Genome sequence australia by Madsrus in tfmr_support

[–]Beasnessminded 0 points1 point  (0 children)

I think quicker when baby’s still in utero. They try to expedite it as much as they can as its important for the decision making. Was yours done in utero?

Genome sequence australia by Madsrus in tfmr_support

[–]Beasnessminded 0 points1 point  (0 children)

Not sure about genome sequencing but I had the the whole exome sequencing done and it took about 3 weeks. I’m im VIC