PKU, Vitiman K & eye ointment

[raspberrydoula]

I get asked a lot for info on vitamin K, eye ointment and the PKU test, as they are routinely given here in <st1:city w:st="on"><st1:place w:st="on">Vancouver</st1:place></st1:city>. Any idea where I can get some good reliable info to pass on?

[RosyDoula]

Quote:

Originally Posted by raspberrydoula I get asked a lot for info on vitamin K, eye ointment and the PKU test, as they are routinely given here in <st1:city w:st="on"><st1:place w:st="on">Vancouver</st1:place></st1:city>. Any idea where I can get some good reliable info to pass on?

Here are a few to start you off.

http://www.gentlebirth.org/archives/pku.html
http://www.gentlebirth.org/archives/eyeointm.html
http://www.gentlebirth.org/archives/vitktop.html

[douladot]

When I had my last child just over 3.5 years ago I was told by my midwives at the birth center where I was to deliver that I could pass on the Vit K shot, the eye ointment (or at least delay for bonding), BUT if I passed on the PKU test that I would probably set myself up for a visit from social services ---gggrrrr.....I didn't want to do it and felt awful when the did the heel stick. They would not let me breastfeed or hold her while they did it. I sat in a chair and cried as they did the test. Now reading this makes me angry that I ever agreed to it because I "knew" my baby was fine and didn't need the test but they used that ole scare tactic of "social services will probably get involved" if I didn't have it done!!! Makes me mad!!

[tlcdoula]

Quote:

Originally Posted by douladot When I had my last child just over 3.5 years ago I was told by my midwives at the birth center where I was to deliver that I could pass on the Vit K shot, the eye ointment (or at least delay for bonding), BUT if I passed on the PKU test that I would probably set myself up for a visit from social services ---gggrrrr.....I didn't want to do it and felt awful when the did the heel stick. They would not let me breastfeed or hold her while they did it. I sat in a chair and cried as they did the test. Now reading this makes me angry that I ever agreed to it because I "knew" my baby was fine and didn't need the test but they used that ole scare tactic of "social services will probably get involved" if I didn't have it done!!! Makes me mad!!

Sorry, but how did you know your baby was fine?

I ask only because I have two daughters with PKU and it really bothers me when parents say they "knew" nothing was wrong because I would have sworn there was nothing wrong with my daughters too. Plus I have been VERY active in the past with newborn screening. It is important to know that this test doesn't just test for PKU, and depending on your state it can test for over 30 different genetic disorders (or perhaps even more since I have been out of the loop for many years).

I can tell you that although these genetic disorders are rare there are so many of them and they happen often enough that this test is so important. With this simple test (yes it sucks to have your baby stuck) they can prevent some major issues or even death. I am not trying to use scare tactics like the doctors do but am really bothered by this because I have met parents who haven't had the test and their baby had the disorder. My heart just aches for these families.

I can tell you that when Breanna was born she was absolutely perfect!!! She was beautiful, wonderful and when that test came back positive my heart sank. It took me so long to try and grasp how this perfect child could have something wrong with her. Now I have two daughters with PKU and I can guarantee that unless you knew which ones had it you could still never tell by looking at them that anything is wrong with them. The reason is because my daughters were diagnosed and put on their special diet and continue to have regular blood tests that have helped them to sustain their intelligence.

I think it is important to remember that there are times for medical interventions. Sorry, hope I haven't offended you, but I am very passionate about this screening and have met thousands of families who have children with disorders that were diagnosed through this screening and also met thousands whose children were not diagnosed early and have seen the effects and the regret these families have after the fact. Yes it sucks to have the blood draw, and there are ways of doing it gently!!! I know because when my children have their blood tests I have to do them, and have had to do them since they were about a week old. When they were newborns I had to do the tests biweekly and I would like to think that I did them gently and in a loving manner and so these tests can be done that way.

[motherwise]

Quote:

I ask only because I have two daughters with PKU and it really bothers me when parents say they "knew" nothing was wrong because I would have sworn there was nothing wrong with my daughters too. Plus I have been VERY active in the past with newborn screening.

I think the point is that this

Quote:

Originally Posted by douladot they used that ole scare tactic of "social services will probably get involved" if I didn't have it done!!! Makes me mad!!

is not a good reason-and more importantly, not a *real* reason- to do the test. Information is appropriate regardless of the care provider's feelings on the matter, and blanket threats do not equal informed consent!

[motherwise]

Quote:

Before the baby leaves the hospital, state law requires that the baby be given a PKU test. This is also a simple heel stick. However, babies must breastfeed for several days before taking the test if the results are to be accurate. Most babies receive the test before leaving the hospital, on the second or third day after birth. This is not long enough to see whether or not the breastfed infant as PKU. So you can also sign a waiver for this test, and tell them you will take the baby to the pediatrician later to receive the test. PKU is a disorder in which the baby cannot process phenylalanine, an amino acid. Babies with this disorder may experience brain damage unless they are put on a special diet within a couple of weeks after birth. Breastmilk has lower levels of phenylalanine, so it takes longer to build up in the blood of the baby. It is a rare disorder, and most homebirth parents do not even bother to get the test done.

I thought this might be good info to give to clients who plan on BFing...it's from The Center for Unhindered Living

I think just like anything else, it would be good to get some statistics on how commen PKU is as well as different ways to do the test (different kinds of lancets, methods etc) to reduce pain, etc...you could create a handout with all kinds of info (listing sources) and then just put it in your resource binder.

[tlcdoula]

Quote:

Originally Posted by motherwise I thought this might be good info to give to clients who plan on BFing...it's from The Center for Unhindered Living I think just like anything else, it would be good to get some statistics on how commen PKU is as well as different ways to do the test (different kinds of lancets, methods etc) to reduce pain, etc...you could create a handout with all kinds of info (listing sources) and then just put it in your resource binder.

It is very important to know that it depends on the type of testing that each state uses to determine effectiveness of the testing. In my state testing is typically accurate within 24 hours of the babies birth regardless of how much that infant has eaten or not.

It is also important to know that this test does NOT just test for PKU and some of the disorders that they test for can be deadly without the infant ever eating!!!

This test used to be for PKU alone, but this isn't so anymore. My state tests for 49 disorders (I just went to their website to check it out). In fact I do not know of any state within the U.S. that tests only for PKU.

[1stimestar]

With my home birthed Olivia I declined the eye ointment and the Vit. K but I took her in for the PKU test. The thing I stress the most to my clients are that it is done properly. There is NO reason not to be able to hold and/or breastfeed your baby while it is done. Holding a warm hand or warm cloth over your babies foot for several minutes before hand helps also. The technician is not supposed to SQUEEZE baby's foot, though they tried that crap with Olivia. A simple almost firm massaging motion is much better.

And anytime I hear of the Social Service threat I tell them "I'd be more then happy to help educate them on the state and federal regulations. When can we set up an appointment?" Really, they have much more important things to take up their time.

[tlcdoula]

Quote:

Originally Posted by 1stimestar And anytime I hear of the Social Service threat I tell them "I'd be more then happy to help educate them on the state and federal regulations. When can we set up an appointment?" Really, they have much more important things to take up their time.

You are so right!!!! Honestly I don't think social services would even becoming involved. In fact I know of a family whose baby was diagnosed with PKU and they decided not to follow the diet. It took social services so long to become involved that there were issues with the child. It was very sad because the doctors and dietitians worked very, very hard to even get this too happen. I doubt that they would coming running - the hospital social worker might visit the room, but true social services - I doubt it.

[Kim Trower]

Quote:

Originally Posted by douladot When I had my last child just over 3.5 years ago I was told by my midwives at the birth center where I was to deliver that I could pass on the Vit K shot, the eye ointment (or at least delay for bonding), BUT if I passed on the PKU test that I would probably set myself up for a visit from social services ---gggrrrr.....I didn't want to do it and felt awful when the did the heel stick. They would not let me breastfeed or hold her while they did it. I sat in a chair and cried as they did the test. Now reading this makes me angry that I ever agreed to it because I "knew" my baby was fine and didn't need the test but they used that ole scare tactic of "social services will probably get involved" if I didn't have it done!!! Makes me mad!!

The other two tests I believe are not necessary especially if you know your history (eye ointment) and I believe there is a reason we are not born with Vitamin K and there are other ways to deal with that HOWEVER the PKU is a nasty heel stick, yes but a so important test as if there are problems metablically at least you can deal with them from the start...by the time any symptoms show most damage is irreversible. Just my opinion..It is a shame you could not hold and nurse your baby during the procedure..but I do believe the test is an important one and one a mother should know about completely before deciding to say yes or no to it.

[douladot]

Quote:

Originally Posted by motherwise I think the point is that this is not a good reason-and more importantly, not a *real* reason- to do the test. Information is appropriate regardless of the care provider's feelings on the matter, and blanket threats do not equal informed consent!

Thank you Marilyn -- this is exactly why it upset me so much and the fact that they refused to let me nurse or hold her during the exam and they did SQUEEZE the hell out of her heel while they did it and unfortunately I did not know that there were other methods. But, it was the scare tactics that I hated most. Had I been told all about the test and why it was necessary and how common or not common the diseases were I would have probably consented if they had let me hold or nurse her while it was performed....it is just like everything else we do and try to do as doulas....I don't like having something shoved at me and TOLD that it HAS to be done this way with no room for compromise!

[Jilian]

I have read some good discussions on Vitamin K and eye ointment over at mothering in the MW forum. I agree with what most of the MW have said: Yes, babies are born with low levels of vitamin K, but there has to be a REASON for it. Why would every baby be born defective? I tend to trust nature and believe there is a reason that ALL babies are born with low levels of vitamin K.

That being said, if a mom plans on circumcising (or if her baby has to undergo any othetr procedure or surgery) her baby in the first few days of life, I thinks she should opt for the vitamin K shot. Some women also like to get the vit K shot if the baby has a hemotoma (sp?) or had a very traumatic birth.

As for the eye ointment, it is given because if mom has an STD the baby's eyes could become infected from passing through the birth canal. The infection can lead to loss of vision. Don't quote me on this, but I think the two STDs it protects from are Ghonnorhea and Chlymidia (someone please correct me if I'm wrong). These STDs can be tested for during pregnancy. Some doctors worry about a cheating DH/DP that can infect mom after the test has been done. IMHO, if you are sure you do not carry these STDs then the eye ointment can be skipped.

[RosyDoula]

Quote:

Originally Posted by Jilian Yes, babies are born with low levels of vitamin K, but there has to be a REASON for it. Why would every baby be born defective? I tend to trust nature and believe there is a reason that ALL babies are born with low levels of vitamin K.

ITA! Nature knows best. We are constantly finding out that everything our body does has a purpose, even if we don't totally understand it yet.

Quote:

Originally Posted by Jilian That being said, if a mom plans on circumcising (or if her baby has to undergo any othetr procedure or surgery) her baby in the first few days of life, I thinks she should opt for the vitamin K shot. Some women also like to get the vit K shot if the baby has a hemotoma (sp?) or had a very traumatic birth.

Totally agree again. It would be preferable for the baby to get oral vitamin K IMO, but in instances like these it MAY be warranted. Has anyone provided information about the shots and cancer in later life? That info ought to be an important part of the parent's decision making process.

Quote:

Originally Posted by Jilian As for the eye ointment, it is given because if mom has an STD the baby's eyes could become infected from passing through the birth canal. The infection can lead to loss of vision. Don't quote me on this, but I think the two STDs it protects from are Ghonnorhea and Chlymidia (someone please correct me if I'm wrong). These STDs can be tested for during pregnancy. Some doctors worry about a cheating DH/DP that can infect mom after the test has been done. IMHO, if you are sure you do not carry these STDs then the eye ointment can be skipped.

That makes sense. I didn't know that.

[tlcdoula]

Quote:

Originally Posted by Jilian IMHO, if you are sure you do not carry these STDs then the eye ointment can be skipped.

I guess I would wonder - how can you be "sure?" Unless you are with your dh/dp every single second of the day and night you do not know 100% what they are doing. I know trust factors in and love should, but some men even though they love their spouse still cheat, so you just never know. I have a very good friend who would have bet everything she owned on her husband never cheating because he was cheated on by his first wife, was devastated, etc. Each time she went to the doctor for her annual exams she declined the STD tests because she said she was sure he wasn't cheating and never would. Low and behold, one day she has something going on down there - you guessed it. She went in and found she had an STD. She was devastated because she would have bet her life he would have never cheated.

Another friend also would have bet everything she owned that her dh would never cheat - low and behold she ended up with herpes.

Both women stayed with their dhs and they are very much in love, and they were treated great, etc. I guess I am just sharing because you do not ever truly know 100% what your partner is doing and you can really only be responsible for what you are doing yourself and do the right thing.

[Jilian]

Quote:

Originally Posted by tlcdoula I guess I would wonder - how can you be "sure?"

I guess the only way to really be sure is to be tested very late in pregnancy and then to not have sex again until after the birth.

I guess I'm just a trusting person. I truly trust my DP and have educated him on the pros and cons on not getting the eye ointment. He understnads that I trust him and that my tests came back negative for any STDs. I'd like to think he would not risk our son losing his vision just to go out and get some. I know it sounds so silly, but we have a mutual respect for each other and I truly believe that neither of us would ever cheat on the other. I can honestly say that there is no doubt in my mind that he would ever cheat on me and I'm willing to forego the eye ointment because of my trust in him.