Niamh Failed Her Blood Spot Test [results pg 9]

[sam's mum]

Thinking of you. Hope everything is ok. About 1 in 25 people in the uk is a carrier, so hopefully you'll find out that it's just that and she's not affected. Keeping everything crossed for you

There are so many reasons why babies don't gain weight as they are expected to at first, but are still perfectly healthy. I know it's hard not to worry though x

 

[Linzi]

Oh hun I hope everything turns out ok

xxx

 

[fairywings]

Hope everything turns out ok! x

 

[sam's mum]

I'm sure you don't need any more googling and scientific research (so please feel free to ignore this) but I've just been reading a paper published a couple of years ago which has some percentages of outcomes of positive heel prick tests and I thought it might give you a bit of hope until you find out more.

Of the 0.26% of heel prick tests that come back indicating an abnormal result for CF, 94% of those babies have only one mutation (and are therefore carriers) but show elevated IRT (the substance they initially test for). Only 6% have 2 mutations and are therefore affected.

Really hope you get some good news after the next tests. Thinking of you all x

 

[Pyrrhic]

Thanks hun, thats one fact I wanted to get ahold of. How many people were carriers and how many had CF. That makes me feel less worried.

I've left a message with the CF Trust as I want to know how accurate the tests are too.

 

[kelly2903]

Thanks hun, thats one fact I wanted to get ahold of. How many people were carriers and how many had CF. That makes me feel less worried.

I've left a message with the CF Trust as I want to know how accurate the tests are too.

i hope they give you the answer that you are looking for hun, thinking of you good luck

 

[Christine33]

 

[Mamafy]

Hun you and Niamh will be in my thoughts all week, if there is anything you can do just shout. My little man has chronic lung disease and to hear anything being 'possibly' wrong with your baby is very daunting I remember when I was told Katie had Kidney reflux I felt sick. Arm yourself with as much knowledge as possible but hold onto the hope that Niamh is the 1 in 25 that is a carrier I've been thinking of you all evening as I'm sure alot of girls on here have. We are all willing Niamh and yourselves to get good news on Friday xoxoxoxo

 

[Pyrrhic]

Thanks Mamafy, I had a little blub reading that. It's so amazing to have BnB and such a supportive community. You guys are so wonderful. I don't want to talk to anyone in RL about this as previously people made me feel neurotic when I said she wasn't right. Plus I don't want to worry family/friends just yet. It's really scary when theres a chance they're ill, and theres nothing you can do about it.

 

[marah_rn]

thinking of you and your princess. God bless hun.

 

[bluebell]

xx

 

[Tinylo]

I hope your LO will be ok, thinking of you both x

 

[Nikkinoonoo]

I'm so sorry to hear that, my thoughts are with you xXx

 

[Tilly]

 

[Pyrrhic]

Thanks everyone. I've been reading that CF is what they check for at the 12 week nuchal scan and I never had one done. I feel awful now, knowing that if there was something wrong I could have known in advance. Not that it would have made any difference, I just feel guilty now.

 

[xarlenex]

You shouldn't feel guilty, its not anything you done nor could have prevented.



xx

 

[doctordeesmrs]

Hope everything turns out ok hun

 

[heather91]

Don't feel guilty. It's important that you stay positive and hope for the best. As you said, even if you knew it wouldn't have made any difference. My thoughts are with you all xx

 

[Mamafy]

Just checking in on you, don't go blaming anything you've done hun; you're a brilliant mummy and Niamh is a gorgeous little baby

xoxoxo

 

[Sovereign]

Don't feel guilty hun, it's not your fault. Thinking about you both, hope everything turns out okay. x