Niamh Failed Her Blood Spot Test [results pg 9]

[lorrilou]

fingers crossed they made a mistake hun. x

 

[FEDup1981]

i hope theyve got it wrong. Do u know what happens now, how long this test wil take? I bet ur mind is all over the place xxx

 

[Michy]

Gosh hun, I really hope things r ok xxxxxxxxxx

 

[Pyrrhic]

The results will come back on Friday. I've been told that a positive means she's either a carrier or has the disease, so we just have to keep everything crossed that she's a carrier. They're going to send her for tests (sweat test) at a specialist Children's Hospital about 80 miles away if this results on Friday comes back positive. They have a consultant there who specialises in Cystic Fibroses.

My mind is all over the place at the minute. Her breathing is still erratic which is worrying enough to be honest. The MW told me that they're rechecking in case the test was wrong (contamination or something) but she went into great detail about the Children's Hospital and tests, so I have a feeling we'll be going for further tests.

Until Friday I'm going to read everything I can (and thanks for the link posted) as that's the only thing I can do at the minute. Hopefully, the tests will come back negative but if they don't then I am prepared enough to ask relevant questions when I go to the Children's Hospital. It's a very scary thing to read about though

 

[Pyrrhic]

Have you and OH been tested then? As you both need to be carriers for her to possibly have CF.


This website is very helpful

https://www.cff.org/aboutcf/testing/geneticcarriertest/


My friend's brother had CF so I know a bit about it but not an awful lot

Thanks for the link hun. We have no idea if we're carriers. I'll ask to be tested on Friday if the test comes back positive again.

 

[TashaAndBump]

 

[sparkswillfly]

I really hope it comes back negative. Thinking of you and little Niamh. xx

 

[baboo]

I really hope everythings ok!
xx

 

[BlackBerry25]

You guys are in my thoughts and prayers! I really hope it was a mistake or that she is just a carrier.

 

[Serene123]

 

[Elli21]

Fingers crossed hun x x

 

[babe2ooo]

oh no hope everything turns out ok

 

[Hevz]

Have you and OH been tested then? As you both need to be carriers for her to possibly have CF.


This website is very helpful

https://www.cff.org/aboutcf/testing/geneticcarriertest/


My friend's brother had CF so I know a bit about it but not an awful lot

Thanks for the link hun. We have no idea if we're carriers. I'll ask to be tested on Friday if the test comes back positive again.

Aww...I wasn't sure at that point what tests had been done. I hope she doesn't have it honey....will be thinking of you

 

[Vickie]

Hope everything turns out okay

 

[Pyrrhic]

Just reading as much as I can about symptoms in newborns. Breathing difficulties and weight problems can both be signs, both of which she has. She lost weight between week 2-3 and now has only put on little. She's 4 weeks today and only weighs 8lbs 4oz which the HV was a bit concerned with.

Other babies are fine at birth but then can't seem to put on weight in their first four to six weeks.

Repeated chest infections, oily, smelly stools, noticeably salty-tasting skin, and a persistent cough and wheeze are also symptoms of cystic fibrosis. If any of these symptoms make you concerned, talk to your doctor.

I'm trying not to get to worried, but it's hard.

 

[babezone]

hope everything turns out okay hun x x

 

[Alexas Mommy]

I hope she is okay.

 

[ryder]

awww

 

[SuzyQ]

sorry to hear this-fingers crossed for you xxx

 

[kelly2903]

i hope your little princess is ok!

keep us updated hun xxxxxx