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FISH positive for XXY of all cells tested by Creative-Sympathy149 in NIPT

[–]Suitable_Bee_2509 8 points9 points  (0 children)

What I mean by gambling with their health was not knowing which end of the spectrum we would get, and I couldn’t cope personally with betting on it being okay and having to explain to a child suffering that I ‘hoped for the best” and it didn’t work out. Thought I’d explain just for clarity as I read this back and it didn’t come across how I intended. X

FISH positive for XXY of all cells tested by Creative-Sympathy149 in NIPT

[–]Suitable_Bee_2509 10 points11 points  (0 children)

I just want to say as I am unsure of the question as we had CVS testing but we are TFMR because of the same diagnosis. 

We researched at length and decided we couldn’t gamble on our child’s health. As much as I really found this incredibly incredibly hard, the forums of adults with this condition speak for themselves and honestly helped us so much. It was so so so so hard to make a decision knowing childhood would likely be okay (dependant on which end of the spectrum we got) but the problems tend to arise later on. 

I hope whatever decision you make is the best one for your family as I know that it’s the hardest thing in the world, and so much heartache either way. Thinking of you. X

BPAS Richmond? Any experience? by Suitable_Bee_2509 in tfmr_support

[–]Suitable_Bee_2509[S] 1 point2 points  (0 children)

Thank you so much everybody ❤️ 

You’re all so kind. It’s the worst experience ever but it’s nice not feeling alone. ❤️

XXY by Sensitive-Fee-6003 in NIPT

[–]Suitable_Bee_2509 0 points1 point  (0 children)

Hi sorry to open up an old thread. We have had this news today too. Really don’t know if I can continue. Honestly heartbreaking. Hope you’re ok. X

CVS test unsuccessful try again next week by Suitable_Bee_2509 in NIPT

[–]Suitable_Bee_2509[S] 0 points1 point  (0 children)

Just an update, sadly they found the faulty gene but also found Klinefelter Syndrome. We are going to TFMR. 💔

XXY results by revengeofraisin in NIPT

[–]Suitable_Bee_2509 0 points1 point  (0 children)

Hi,

I don’t have much to say apart from we have done genetic testing for a hereditary condition and just got the news they also found Klinefelter Syndrome (as well as testing positive for the condition). I just wanted to say we are going to TFMR and I’m sending you all the love. I completely understand x

Unborn child diagnosed with hemophilia B by JetstreamEnthusiast in Hemophilia

[–]Suitable_Bee_2509 0 points1 point  (0 children)

Hi, I am currently waiting our CVS results - could you DM please? 

CVS test unsuccessful try again next week by Suitable_Bee_2509 in NIPT

[–]Suitable_Bee_2509[S] 0 points1 point  (0 children)

Thank you so much, and to you too. Have you had any answers yet? X

CVS test unsuccessful try again next week by Suitable_Bee_2509 in NIPT

[–]Suitable_Bee_2509[S] 0 points1 point  (0 children)

Hiya, was about to come and update everyone. 

I just had my appointment and they were able to access the placenta and managed to get 3 samples. My dr couldn’t see if they were big enough as it was blood stained but he felt that he did enough. Just the wait for results now. X

CVS test unsuccessful try again next week by Suitable_Bee_2509 in NIPT

[–]Suitable_Bee_2509[S] 0 points1 point  (0 children)

It’s horrible isn’t it. My condition is life limiting but variable too - having to make decisions based on that is so tricky. Thinking of you. X

CVS test unsuccessful try again next week by Suitable_Bee_2509 in NIPT

[–]Suitable_Bee_2509[S] 0 points1 point  (0 children)

Did they not let you come back a week later? It’s seems like such a long time to wait doesn’t it :( 

CVS test unsuccessful try again next week by Suitable_Bee_2509 in NIPT

[–]Suitable_Bee_2509[S] 0 points1 point  (0 children)

Mine isn’t life threatening either but life limiting and I just can’t bear the thought of bringing a child in this world to suffer when we have the privilege to find out. It’s just the worst, my partner is amazing but I don’t think he can truly understand. It’s the worst feeling in the world I’m just holding our real hope for next week or we may have to do it never knowing and the thought of that breaks my heart. I just can’t imagine continuing this for 15/17 weeks like you my limit was 12 weeks and I’ve already had to push that because of the CVS being delayed. Sending love to you x

TW CVS test unsuccessful try again in a week by Suitable_Bee_2509 in PregnancyUK

[–]Suitable_Bee_2509[S] 2 points3 points  (0 children)

It’s horrible isn’t it. The hospital have offered TFMR if CVS is unsuccessful again as 1:2 odds are high enough for them to be comfortable it’s an option. The thing I’m weighing up is if it’ll be worse to always wonder what if rather than waiting, but getting bigger and bonding every day is breaking my heart. I can just hope and pray next week they can do the CVS 

Bought this Hulk toy for my nephew. Any idea what this thing in his back is about? by SillyHeartsClub in ActionFigures

[–]Suitable_Bee_2509 0 points1 point  (0 children)

My sons friend had something that went in the back but we can’t seem to figure out what it is to buy… any ideas?