Terrified - HV needs to discuss newborn blood screening test results

[OrangeMochaFrappucino]

DS2 is six weeks old. He had his heel prick repeated at 21 days because there was an insufficient sample at five days.

The health visitor has just called and says she is coming round with a nurse from the blood screening clinic this afternoon because they need to talk to me.

The blood screening tests for really serious conditions - if they need to talk to me, that must mean something is wrong.

I'm so worried. I know there is no point speculating but I can't help it and feel sick with fear.

I can't stop Googling, which I really shouldn't be doing. I guess they either got an inconclusive result and need to repeat the test (doubt they would send HV and nurse to do this though) or he has one of the conditions or is a carrier. It seems that being a carrier wouldn't impact on his health and is more common so that's what I am hoping - would they do a joint visit to tell me that though? Or does the presence of two of them suggest more serious news? Does anyone have experience of this?

Try to stop googling!! I know it's hard, it's always hard when you suspect there might be something wrong but googling is not going to help.

Do you have plans for the next couple of hours? Can you go out for lunch or get a friend around? You need as much distraction as possible to pass the time.

I hope it's just an inconclusive result and nothing more.

I don't know but really hope everything is ok. Have you got anyone who can come and be with you incase you need some support?

Stop googling.

My gut reaction is that if it was something serious, it would be a GP visit rather than the nurse.

Or they would ask you to go into your surgery to speak to a doctor.

Stay calm. What time are they coming?

And remember plenty of the conditions are treatable even if not always curable. So at least if there is something then with an early diagnosis and the correct meds and/or diet it can be controlled.

My husband is home today and will be here when they come. They're coming at 1pm. She told me on the phone not to worry but how can I not?

I think if it were something serious it wouldn't be coming from an HV. I hope so at any rate. I hope everything's ok OP.

My DS has one of the many genetic conditions they test for (CF). However DS wasn't diagnosed via heel prick.

I sincerely hope your DS just needs repeat bloods but should you have any questions please feel free to PM me.

I wish you all the best for 1pm and agree that you should stop googling. It's just going to get you into a fraught state.

Try to stop googling, it is never your friend.
Can you stay distracted for the next few hours?

I have no experience but really hope it is just a inconclusive test result. They may need two people to retake it.

Try to stop googling, it is never your friend.
Can you stay distracted for the next few hours?

I have no experience but really hope it is just a inconclusive test result. They may need two people to retake it.

He is a carrier for cystic fibrosis. Probably the best news we could get in the circumstances. Thanks for all the support, I really appreciate all the responses.

That's good news. Have they discussed whether you want testing and the possible implications if you have more children? If he is a carrier then one of you must be too. It will only possibly be a problem if you are both carriers. If they haven't already discussed it then worth being referred before you plan another child so you are aware of the options. Meanwhile congratulations and enjoy your son.

Yes. If you're both carriers I think you have a1 in 4 chance of future children having cf.

Yes, we are being referred for testing. We aren't planning more children anyway - it's a relief this didn't happen with our first baby. I am just so relieved that the news wasn't worse and that our baby is healthy.

At least if you are both tested you can inform appropriate relatives and your son will know about it when he eventually wants his own children.

Exactly, it means everyone knows and can make informed decisions. I was so afraid earlier today - I suppose I just complacently regard these kinds of tests and screenings as just routine and hadn't genuinely contemplated the prospect of anything actually being wrong. It was a very sobering experience and I'm cuddling both my boys extra hard tonight!

Great news op. I wish cf testing was routine for all couples looking to conceive. It's the most commonly inherited genetic defects. Get all your family tested too.

My ds is a CF carrier, we were told our other children can be tested when they reach 16.