Importance of newborn heel pr*ck test and is it ever refused?

Has anyone refused the heel pr*ck test on their baby? How imperative is this test and why does the government regulate that the cards containing the blood samples be securely kept on file? Did you/will you hold your baby when this is done or leave the room?

I don't want my bubba jabbed at all and the thought of this test is really stressing me out, but I don't want to be negligent and ignorant on the matter either. I would really like to find out as much as I can on this screening procedure, any info, advice or experiences would help! TIA xox

TBH, I was slack and didn't do much (if any) research on what this was for and whether I thought it was necessary so good on you for seeking information.

DP and I were both in the room while she was having it done (DP held her) and ... she slept through it. Not a peep.

The test checks for genetic disorders such as and including cystic fibrosis, that's just about all I remember of it. It didn't bother DD at all.

Yeah I was just told it was to pick up on genetic disorders that may not have been picked up on through ultrasounds during the pregnancy.

DS screamed through his - but DD was being fed at the time and didn't even flinch - and they did it 3 times with her cos they didn't get enough blood!!!

Must be a girl thing to be tough ;)

mostly they check for CF. among other things its a very important test.

non of my boys even flinched.
and TBH it was the least of our worries for the twins they had so many needles after birth they started to look like a pin cousion.
its really a non event. kinda the same as if your getting your blood sugar checked. doesn't hurt really.

Holly, a good hossy will tell you to bring baby down as they are due for a feed.
Breastfeeding is a great comfort to babies even if they dont end up crying it ill make him feel secure.
I sat on a couch and breastfed DS (football hold) and she *****ed him from behind me.

He didn't flinch and just kept on enjoying his boobyjuice.
As for the injection after birth, pfffft he didn't even need to be feeding he didn't care!!
He has never been much of a crier when it comes to needles.

The heel ***** test (aka newborn screening test or Guthrie test) ensures the early detection and treatment of a number of rare but important conditions such as CF, phenylketonuria, congenital hypothyroidism and lots of other metabolic conditions.

DS handled it pretty well. I got to cuddle him while they did it (twice in one foot cause they couldn't get enough blood!).

The hospital will only contact you about the results if they find anything out of the norm and then you go and do more tests. So if you hear nothing back afterwards, it's a good thing!

ETA - I second what cookiemonster said! BF your bub while they do it, it's very comforting.

Thanks so much everyone, your replies have really put my mind at ease :) I am just a big baby and was really worried about the pain for bubs (my Mum told me that it was a really awful test and both my sisters howled and screamed and it was all very traumatic :( ) I will definitely be feeding him when it's done, it seems to be a good distractor!

Thanks again :)

They might be thinking of an infant blood test - which is horrible. They have to squeeze and squeeze to get blood out and it is really, really distressing :( DS howled when he needed one and then the Dr. didn't even use the results... :(

But the heel ***** is literally just a ***** and them using a piece of carboard and wiping across the blood droplet to get a sample. You will be fine, and so you will bub! :D

wtf?? No one has even mentioned it to me yet!! Is it done to every baby everywhere?? A bit slack if they haven't told me!

Yup SJ, it is generally done on day 2-3 and if you are already home by then someone will come to your home to do it.

Here is an article on it; Newborn screening guidelines: Genetic Health Services - Victorian Government Health Information, Australia

I don't think it is mandatory, however it is highly recommended.

SaraJane yep its standard procedure.
Unless you choose otherwise your baby will have this test, plus hep B injection and vit K injection. The 2 injections are normally done within 1-2 days of birth unless you request otherwise. They dont always tell you like they should, it can often be up to you to "just know" and investigate these things ahead of time in case you decide against any of them.

Personally I think the heel test is more important than the other 2.

They did tell me about the hep b and vit k but not this one. Maybe b/c I'm in the midwifery program and if everything is well go home after 6 hrs, so maybe it's coz someone else will come do it??
I shall ask about it at me appt today anyway, thanks guys!

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Maybe b/c I'm in the midwifery program and if everything is well go home after 6 hrs, so maybe it's coz someone else will come do it??
I shall ask about it at me appt today anyway, thanks guys!

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That could be why, although I would have thought you would have gotten an NBS pamphlet aaages ago. I got a bunch of pamphlets like that at 18ish weeks...
Good luck today!!

just a tip with the test to if you put socks on there feet first to keep them warm....especially if a winter bub makes it less uncomfortable and easier for them to get the blood out. so if you know what day they are doing it put socks on bubs feet.

Jazz had two heel *****s, one for jaundice to test her levels and one for the card. For the jaundice one the pead. did it, and Jazz screamed all the way through. The heel ***** one the midwife did at our home visit, warmed her foot with a warm face washer for a few minutes beforehand and Jazz didn't flinch at all during the test, so definately get them to warm bubs foot first. They have a little machine like the diabetes ***** thing, and them wipe the blood on a card. They needed a vial for the jaundice test and only a dot for the heel ***** card thing so thats probably why she screamed the hospital down.

the testing for phenyketonuria is really important - the impacts of not having this diagnosed early are pretty nasty long term. the heel ***** test is literally only a drop of blood and shouldn't be too traumatic for bubba (i understand that collecting full vial samples is nasty though)

For both the pr*ck and the Vit K and Hep B they took my DS away and did it, which i wasn't real happy about (i couldn't go with him as i was bed ridden for two days after the birth, and they didnt want to do it in the room incase he was upset and disturbed the other lady and her baby, but they brought him straight back and he was not fussed at all by either. but i had a very caring and gentle mid wife looking after us so that helped

Having just spent 10 days camping out in special care, I got to see a lot of them done. When Samuel's was done, I was sitting attached to the bloody breast pump, but DH was with him. He cried and found it quite distressing, but had just been through a couple of days of 3 hourly heal *****s to check his blood sugars and would get quite upset over anyone touching his feet at all at that stage. I've also seen several babies sleep right through it, so their response can vary greatly.

As for the importance of it - the diseases it checks for are rare, but are ones where early treatment is vital. Having a friend whose baby was diagnosed with cystic fibrosis only through the heal ***** test - there's no way I'd refuse it now.

We weren't actually told about it until we began antenatal classes.

BW

Oh, I should point out that theres no way I'd refuse the heel *****. Injections at birth are one thing (I didn't refuse but understand why some do) but the heel ***** is something that I personally consider essential.

It's interesting that a lot of people have mentioned CF (cystic fibrosis) as one of the conditions tested for. CF is tested for in all states of Australia, but there is more debate about its inclusion OS, especially in the States.

I understand that they are offering more carrier screening (before you get pregnant) for CF in Victoria and possibly interstate. Has anybody been offered carrier screening for CF, and have you had it done? I was recently offered it, and took the offer up but i haven't heard of anybody else having it done.

1/25 white people will be a carrier for CF.

1/625 couples will both be carriers for CF (1/25 x 1/25 = 1/625)

Each couple has a 1/4 chance of having a baby with CF, so 1/2500 babies will be born with CF
(1/625 x 1/4 = 1/2500)
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Some of the other conditions tested for, like PKU, are even more important to get the early diagnosis because there are no symptoms of the condition until irreparable damage has occurred.

The only people I know who have been offered carrier screening for CF are those who have a relative with the condition.

BW

OMG - BW you have had your baby!!! Congratulations! :hug:

Holly and SJ, I was at home by the time they wanted to do the test on Natty and it was sad but ok. The midwife was lovely and suggested I feed her while she did it. Natty fed and broke off to have a little tiny cry but soon went back to guzzling away at the boob. It was over in a couple of seconds.
SJ, I honestly can't remember whether they told me about it before Natty was born or not, but then a lot of things happened after her birth that I didn't know would happen, like the paed check-up (where she had to test her hips - Natty hated that too :( ), the newborn hearing test and the fact that since we left on the early discharge program (within 48 hours of having bubs) that we'd need to take her to a dr (we took her to our GP) so that they could listen to her heart to ensure it was beating the way it was supposed to. (Aparently there's a little valve or something that closes over within a couple of days of the birth, so the heart beat makes a different noise once it has closed over. They check this if you are in hospital, but you may be required to take your baby to a dr to get it checked if you have already been discharged.)

There are like 20 different metabolic disorders that they check for in that test, if I remember what the midwife told me correctly. Most of them are pretty rare, but as the others have said, knowing about them right after birth makes prevention/treatment much more effective.

As far as practicalities go - my first two girls were done at the hospital, and they cried and I cried. :( They were lying in those plastic nursery bed things on wheels that hospitals have and I knew they were hungry and I felt like a horrible mother for letting them be hurt like that. The nurses could never seem to get enough blood. They kept squeezing and pulling on their feet. And, of course, a post-partum mother is not one of the world's most rational creatures. :redface: I felt terrible.
With my third (born at home) things went beautifully! The midwife wrapped her heel in a warm wash cloth for a few minutes, while I nursed her. When her heel was nice and warm, I put her up on my shoulder and they picked the heel - two seconds later, it was all done, and she never made a peep.
Just for the record - there is apparently a very small risk of damaging a nerve in the foot during that test. I was unaware of that until my third baby was born as well. Now, I wouldn't skip the test for that, but I think mothers should always be aware of the risks and benefits. And, you would know to watch for anything odd with that foot.
All the best with your up-coming birth! :)

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The only people I know who have been offered carrier screening for CF are those who have a relative with the condition.

BW

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In Victoria at least, they are offering carrier screening for CF through GPs and obstetricians. It costs around $200. (carrier screening for those with a family history is free).

The test is done via a cheek brush (like CSI), so no needles.

The screen picks up around 95% of carriers. If one parent is found to be a carrier, the other can then be tested.

They are trying to give people information BEFORE a child is born with the condition, so they can decide what to do.

Seeing that 1/25 people are carriers, i think it is a great thing to have done

Okay, so 2 important things to remember:

1. Feed bubs at the time of test
2. Make sure his feet are warm

I agree that the test is important and more crucial than the hep B and vit K injections (which I don't plan to have done), I'm just a wuss! I will probably cry if he cries lol. If all goes to plan it will be done in my home as I am booked into a birth centre for 24hour stay.

Thanks so much for all the replies :)

The heel test and the injections are very different.
They are not legally allowed to give any injections to your child with out your consent.
Hospitals will ask you for this before the baby is born and it will be 2 separate forms to sign. If you refuse, then you tell them and they dont give the injections.

The heel test is the same as having blood sugar done, they do it to all babies to screen for disorders not already apparent.

They should tell you all these things in antenatal class, if they havent ask them for it. You must know exactly what they are and will do to your baby without your knowledge - particularly if like me you ended up with a c/s and are in no fit state to tell them after the fact, what you do and dont want :)

Charlotte didnt have the injections but there is no contraidication to the heel pr@ck test

Hi there,

Definately get bubs fot as warm as you can prior to the test as it make it much easier. Also giving baby a feed while it is being done is a great comfort to them and they usually barely even flinch.

Cheers
Clare

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I'm just a wuss! I will probably cry if he cries lol.

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That's perfectly acceptable behaviour in my book, Holly ;) (LOL, I am right there with ya!)

I had tears when they took the vial of blood :cry: Shel looked like she was going to deck the paed!

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I had tears when they took the vial of blood :cry: Shel looked like she was going to deck the paed!

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For the heel ***** they just collect a small amount of blood on blotting paper. Did your bub need extra testing, and that's why they needed a vial of blood? I understand that can be a lot yuckier.

Its a pretty important test IMO

They check for some pretty severe genetic disorders, which if not picked up then might lead to them becoming sick and not getting the right treatment, CF for example.

You will get a pamphlet with all the info on the things they check for.

Jaidan was found to be a carrier for CF. It is important because when he goes on to have kids, if his partner is a carrier they will have a 1 in 3 chance of producing a baby with CF. Lucky for his father and I we found this out and could choose to have genetic councelling to find out who was a carrier, and what our chances were.

All 3 of the boys didn't like it, they cried, but I wasn't in the room for the first 2. I didn't want to be. The older boys dad went, and Ashton was done here at home. They came back a little upset but nothing a booby didn't fix ;)

didnt bother my son at all. Me and my hubby were there and DH held him but he slept thru it. make sure they he/she is feed lol

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Jaidan was found to be a carrier for CF. It is important because when he goes on to have kids, if his partner is a carrier they will have a 1 in 3 chance of producing a baby with CF. Lucky for his father and I we found this out and could choose to have genetic councelling to find out who was a carrier, and what our chances were.

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Hi

You might already know this, but your other boys could also be carriers for CF. The heel pr!ck test can pick up CF carriers (like your little one), but it doesn't always pick up carriers. Important info for other members of your family (siblings, cousins etc). When a family member has been found to be a carrier, genetic testing for others in family is usually free.

take care,

k

oh thanks for that Kate! I have a doc appt today and will ask about getting it done :) I didn't know that!

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the testing for phenyketonuria is really important - the impacts of not having this diagnosed early are pretty nasty long term. the heel ***** test is literally only a drop of blood and shouldn't be too traumatic for bubba (i understand that collecting full vial samples is nasty though)

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This bears repeating - with PKU, if you wait until symptoms appear, it is too late and irreparable damage can be done to your baby. If it comes back positive, complications can be prevented with a special diet.

Make sure your baby is warm and relaxed when they do the test so that his or her peripheral vascular system isn't constricted - and also, there is anecdotal evidence that not cutting the baby's cord until it has stopped pulsing leads to maximum blood volume, making the blood flow more easily when the heel ***** test comes around.

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Thanks so much everyone, your replies have really put my mind at ease :) I am just a big baby and was really worried about the pain for bubs (my Mum told me that it was a really awful test and both my sisters howled and screamed and it was all very traumatic :( ) I will definitely be feeding him when it's done, it seems to be a good distractor!

Thanks again :)

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It *used* to be a horrible ordeal; my daughers dad was particularly worried when we were about to have it done to DD because he remembers seeing his sister take the test (some 14 years ago now); the Dr took out a scalpel and slashed the bottom of her foot and there was blood everywhere, aparently (though perhaps the 8 year old mind does exagerrate lol).

I found out about this test in my first antenatal class on Thursday. I agree that it is important for screening and have no problem with that.

Also I agree with Kate's comments about CF screening - I was tested before DH and I began TTC.

The thing that concerns me about the heel pr*ck test is that they retain the blood sample. The midwife didn't know for how long, but she thinks indefinitely.

Does this concern anyone else? That somewhere, out there, there is a big database that contains our DNA and personal information?

Have I been watching too much CSI? It all sounds a bit too much "big brother is watching" for my liking...

OceanPrincess, that was one of my questions in my original post - a government conspiricy of some kind perhaps? :lol: It doesn't really "concern" me, I'm just curious to know why they keep everybody's DNA on file even after recording the results...

:think:

It was certainly traumatic for Seth, Paris I wasn't there for but Marc was.

Something to keep in mind, some states also use it as a way to store DNA (unathorised too I might add) so if you want your child's DNA destroyed you have to specifically ask for it to be done. Just a bit of FYI.