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

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.