I’m publishing this post as no one I’ve ever discussed this with knew anything about it, and there’s so little information available. I knew nothing of it till very late in my pregnancy when we wrote to the Newborn Screening Programme. We subsequently had all the tests conducted ourselves at The Children’s Hospital at Westmead.
Thanks for taking the time to discuss the New Born Screening programme with me.
Apologies for the length of this email (although I could write significantly more about my feelings in this area), but to articulate my request, the reasons behind it (as you requested) and perhaps feed into potential change in the future I need to go into a small amount of detail.
Background and Request
As mentioned, my partner and I are having a child in approximately 7 weeks. Whilst we have no issue with the various tests conducted in the New Born Screening Programme, we have serious concerns about the storage of the Guthrie card and digitisation of any records as the standard part
of your protocols. Whilst verbal consent is required for the test itself, the lack of explicit required consent and the loss of control over our child’s genetic material to be stored at the NBS Programme is totally unacceptable to both of us.
To that end, I request an exemption from your storage protocols in their entirety with the card to be returned to my family immediately after testing – within a week of the test being conducted. Additionally, no conversion of this information to any other format (analogue or digital) is to
take place. Both my partner and I are both keen to have the test conducted on our child, but without the option of non-storage of the card and associated records we are left with no choice but to decline the test – something we consider a loss but are going to enforce. As I mentioned to
you, we have no issue with the tests themselves or their purpose, only the storage (genetic material and electronic record) component of your protocols.
In a more philosophical sense you asked me to detail some of the reasons for this refusal to consent to the storage of my child’s genetic material. I detail a couple of these below for your consideration:
Personal ownership of genetic material and biometric information
In short, and possibly most importantly, a person’s genetic material and biometric details (fingerprints, iris scans and so on) are not the property of the state, an organisation or any process or system. I consider it unethical for any organisation or person to assert that they have any right to
keep my genetic material (or that of a child I am guardian for) against my will. This goes to the fundamental right of humans over their own bodies in a world that is moving towards eroding these rights either through ignorance or force.
In the case of the NBS Programme, it is doing two different things with the information: testing and storage. Written consent should be required for both as separate activities. It is noteworthy that while verbal consent is acceptable, refusal of the NBS test must be documented in
writing (no doubt to absolve hospitals of legal liability). Consent or refusal should be documented in writing for both test and storage.
General community education and understanding
Whilst the NBS Programme might consider that their refusal rates; roughly 50 per 100,000 per year; to be quite low, it is clear that this is based on general ignorance within the community of the fact that the the genetic material of their child(ren) is stored and not due to informed consent. I have done considerable ‘asking around’ of my friends, colleagues and wider family who have had children in the last 5 years and, whilst this is not exactly ‘scientific’ research, virtually none were aware of the storage of the Guthrie card previous to my raising it.
Research conducted (that no doubt you were a part of) in the Report prepared for NSW Genetic Services Advisory Committee, NSW Health – Community Views and Perspectives of Newborn Screening by Muchamore et al (2006) states (page 5) that:
Storage of Samples
- The concept of storage and further use of blood, tissue and biological samples after initial medical testing had not previously been considered by participants.
- Information provided to the participants about the current practice of storage and further use of NBS Sample Cards was surprising and even shocking to them.
- Participants widely perceived that it was vital for parents to know about these aspects of the NBS programme.
Additionally on page 30
“There would seem to be a very low level of public awareness that NBS samples are stored and indeed many people do not seem to have previously considered what happens to other biological samples they have given in health settings.”
This was over 5 years ago and it is obvious that the community, generally speaking, are no more informed now than in 2006 and that the NBS Programme is not acting in transparent manner relative to people’s understanding of their activities.
Publishing information is one step whereas active education and explicit informed consent is another. I posit that if the public were cognisant of the storage of the Guthrie card, its potential further usage and its implications, then refusal rates would skyrocket. This has been raised in previous discussion:
“Obtaining explicit consent to the storage of newborn screening cards may have the unwanted effect of decreasing participation in screening programs. Parents might refuse to allow their child to be screened for possibly life-threatening but preventable disorders because they do not wish their child’s sample to be disclosed to the police later in life or used in research” (ALRC Report 96/19).
A documented, multistage consent process would immediately nullify this ignorance, whilst simultaneously providing an option for those that have reason to take issue with either test and/or storage.
As was the case in other states of Australia, police have demonstrated a disregard for the purposes of New Born Screening programmes:
“The police have accessed the database without consent in the past. In Western Australia this led to the Perth hospital destroying all their samples to ensure this sort of thing couldn’t happen again.”
Guthrie Cards, Catalyst, ABC Website
This adequately demonstrates the issue of police attitudes towards the public. Whilst the NSW NBS Programme has a MOU with the NSW Police, this is not legally enforceable should push come to shove and is trumped by a Court Order proving it provides no real legal protection for the genetic material or personal information. Of course if the court directs a person to give genetic material this is equally as enforceable, but it is with the knowledge of that person and not behind the scenes and requires a higher level of forensic proof on behalf of the police. Again, the only decisive act on a personal level to guarantee safety in this environment is to exclude oneself (or one’s dependants) from any data storage (whether digital, genetic or biometric) where concerns arise.
Muchamore, I. Morphett, L. Barlow-Stewart, S. Community Views and Perspectives of Newborn
Screening, Report prepared for NSW Genetic Services Advisory Committee, NSW Health, February
Guthrie Cards, Catalyst, ABC Website. Available from
http://www.abc.net.au/catalyst/stories/s867619.htm (viewed 7 September, 2011)
Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC Report 96)/19.
Human Tissue Collections, 19. Human Tissue Collections, Issues and problems, Australian Law
http://www.alrc.gov.au/publications/19-human-tissue-collections/issues-and-problems (viewed 7
My lovely friend, Jax tagged me in a blogpost, and seeing as I haven’t written anything except work related for an age, I thought I would use it as a prompt to kickstart some writing. Here you go Jax!
- What was the best part of your day today?
Cuddles with my daughter and husband in bed this morning.
- What/who made you start blogging?
Documenting my food adventures! I also needed an excuse to go out ;-)
- Name your perfect dinner party guests, dead or alive?
Ooh that’s a good one. Stephen Fry: his wit and humour would go down a treat. Anthony Bourdain for tales of food adventures, my mate Carm for her ability to charm anyone and her zest for life. Hmmm, to be honest, no idea who else? People who like food, wine and talking and laughing.
- Favourite way to spend a day off work?
A movie! Lunch! A Mani/pedi if I’m really lucky, all on my own. A rare treat these days
- Best holiday location – and why?
Last year on our European adventure I fell in love with Barcelona. I need to go back and spend WAY more time in BCN and Spain. The food, the vibe, the beach, the history, vermut, sexy accents, you name it, Spain has it.
- Is organic food just a load of old nonsense?
YES! As a marketing gimmick in supermarkets, it sure is. From genuine farmers (who are not certified but are still organic) no. From what I understand from speaking with primary producers the whole organic certification process in Aus is a bit of a scam and potentially very expensive for them and us!
- Cosmetic surgery – would you?
Hmm, yes, to remove old tattoos, sure. You offering to pay?
- What do you look for in a blog/what motivates you to follow someone’s work?
Honesty, don’t like gimmicks, good spelling and grammar! This is so important only because it impacts on your ability to actually read the posts easily. Engaging content: I’m reading more “mummy blogs” these days, but that’s where I’m at! Still love food, and still love magazine style trashy sites like Jezebel
- You win the lottery. You spend your cash on….?
Buying an actual house, not an apartment, a car and a holiday somewhere warm and beachy
- Top of your bucket list is….?
ummmmmm….no idea. More travelling? More study?
- If you could swap lives for a day, who would you chose to be?
Hmm another great question that I’ve never thought about. I think I would like to swap lives with someone who is calmer, more accepting and patient than me so I could learn how to do these things better.
- Fix the window pane in the dining room
- Lose 10kgs, get back on the 12wbt horse
- Find a new job, full time in state or local government or other public sector type place <on hold until end of maternity leave>
- Install ceiling lights in the bedrooms <tried, didn’t work, new solution required>
- Get flexible enough to touch my toes again by getting back into yoga at least 2 times per week
- Start swimming laps again, I want to swim 100 metres freestyle by 31 December
<Not a realistic goal with the way our swimming lessons and gym visits fall>
- Spend a couple of hours each week getting organised: meals, shopping, activities, chore <So far so good..>
- Get back to the gym, renew my membership
- Be a better Mama – do a parenting course < No parenting course, but seeing someone to talk about how I can improve my own behaviours so I don’t pass them on>
- Paint Monkey’s bedroom wall
- See my good friends more regularly, make a better effort to stay in touch <This one will never be crossed out and is an ongoing project: So far, so excellent>
- Try to spend some better quality time with Stormie, date night once every 8 weeks
- Try to have another baby <Baby due this year>
- Spend less money
Now let’s see how many of these we can cross off this year
So I got married recently. In fact it’s been a whole 6 weeks since we did the deed. And I keep getting asked: “So do you feel different? Have things changed?”
Well for us the answer is no: We’ve been together for over 7 years, have a mortgage and a toddler, and have known each other since December 1999.
So why is it different for everyone else?
This is my theory:
Why marriage can change things for some couples:
- They haven’t been together as long
Stormie and I have been together for years, and we knew each other for years before that. I don’t mean to sound unromantic, but there’s very little new or surprising to each other. We’re not in the early stages of discovery as other couples who haven’t been together as long.
- They have really BIG weddings
Big weddings are big work. They can put an awful lot of stress on a couple both mental and financial. They are also a gateway. A lot of couples wait until their weddings to start having kids or move in together. We didn’t do this. We moved in together then years later bought a place together and finally had a kid together.
For many couples I think the expectations around what it is to be married can make a significant change to a relationship. We’ve been as good as married for a few years already. No difference there. We’ve worked out the housework and the child care, who takes out the rubbish etc. We’ve had our knock down drag out fights around each other’s boundaries. It’s all been done. No massive difference here. However we are wigged out by referring to each other as “Husband and Wife”!
So, if nothing has changed why did we get married? As silly as it sounds, and as unfeminist as some may take it, I wanted to have the same last name as my partner and child. Getting our new medicare cards after Monkey was born was the first time I really felt a noticeable difference. I wanted to be part of the same gang. We thought about changing my name by Deed Poll, but then Stormie proposed and it felt right.
So that’s the big change: I have a different name. And I’m thrilled.
I fell off the 12wbt wagon. It took me a surprisingly long time for my bad habits to resestablish. The key culprits however were my exercise dropping off in favour of the kid’s swimming lessons and music class which coincided with my regular gym classes. I felt obligated to carry out these activities for a couple of reasons. It took bloody ages to get into swimming classes. Would you believe 6 months? Crazy! Also, The monkey loves music and movement, so I really loved taking her. Unfortunately for me, this compounded with Stormie being back at uni so weekends also suddenly being without the additional support that allowed me to go to the gym on the weekends.
Music we are no longer going to as the amazing teacher has left. So that’s one easy decision made. Next, seeing if I can change swimming to a super early class or to a weekend, so I have more options when it comes to the gym.
I will also stop baking (again) I do find baking really relaxing, but the result quickly ends up on my stomach, hips and face, so the occasional (purchased) treat and that’s it!
During this time, my thyroid finally fritzed out and I’ve had to start medication. I have a family history of thyroid problems, as well as having some toxic nodules that were zapped with some radioactive iodine some years ago. I was told at the time that ending up on medication was inevitable. However, I was hoping it would take longer. But really I shouldn’t complain, as I’ve been monitored so closely for so long, it never escalated so as to make me unwell.
But things aren’t ALL Bad: One of the best habits that has stuck is meal planning. I spend an hour or so each week planning the next week’s meals using this nifty tool: Plan to Eat It takes a while to wrap your head around, and set up, but now, it’s fab. I have a bank of recipes and add to them regularly. You can drag and drop your meals, change serving sizes, then it spits out a shopping list. It’s mobile accessible so you can check off your shopping list on the phone. I love it. This means we’ve stopped wasting a lot of food and money. I keep serving sizes small, so we throw out a lot less. I also check my cupboards thoroughly before each shop so I know exactly what I’m missing. A little time in this area seems to have a huge pay off.
I’ve also been inspired by the commitment my friend Kim has made to working on her health recently. Reading about her challenges and her successes has really made me stop and think about my own behaviour.
The point of all of this? I’m getting back on the 12wbt horse, and getting my head back into the game. I’m getting married in a few weeks and my wedding dress is snugger than it was when I bought it. I’d like to be able to wear it again, and even take it with me to Europe so if Stormie and I get a chance to get away and have a date on our own I have an amazing dress to wear!
I need to re-commit to the process. I need to spend time on myself, getting back into exercise, ensuring I spend time on myself for both my mental and physical health. No more excuses.
We’re going on a family adventure!
After not having a holiday for 5 years, we’re off later this year on a fabulous European adventure.
We are SO excited and can’t wait to go, so we are after ALL your travel with children tips and recommendations for these fine cities.
I’m really finding I’m struggling at the moment. The minutiae of everyday life feels like a massive weight that I’m dragging behind me as I’m trying to keep up with what’s going on and what I feel I have to keep up with.
Keeping us fed, watered, entertained, clean and healthy. Trying to maintain some semblance of a healthy relationship. Trying to get my head in the right space for work. Worrying about our parents. Dealing with crap from other people.
It’s all feeling pretty overwhelming at the minute and I’m not sure what I need to do to make it not feel overwhelming. I’m trying to keep my head down and focus on the immediate tasks, get the shopping done, make appointments for the dentist, the optometrist etc But it doesn’t seem to stop the panic from setting in.
I am trying to have more time to myself, going to the gym, having the babe in childcare for an extra couple of hours per week. But things still feel like they’re piling up, and some of these basic small tasks start the panic all over again.
15 Months. Fifteen months. 1 year, 3 months. One year and three months of breastfeeding. And then it stopped. Just like that. In one single day. It’s now been about a week. People say to keep offering, and I have been, but she is not interested at all.
It’s all the fault of the Coxsackie Virus a.k.a. Hand, Foot and Mouth; a common virus amongst the smallies, especially in childcare etc
Her mouth, and in particular her tongue, was so sore she couldn’t attach properly and when she tried she would scream. It was awful. Talk about aversion therapy!
Some of have said: “Well, you were already weaning, so this just speeds it up”
Yes, that’s true, but I wasn’t ready for the suddenness of it.
When I was pregnant, I was so looking forward to breastfeeding, with a few fears as my mother had issues. However, at all check ups, education sessions with the Breastfeeding Association, I was told not to worry, that these things aren’t hereditary. Just wait and see.
I ended up having an emergency ceasar after 4 days of labour (though my hospital records don’t reflect same, according to them 7 hrs active labour). I was exhausted. Beyond exhausted and had very little help with getting feeding established. Baby was kind of shoved on the boob and off we went.
My poor baby girl was getting more and more frantic as the hours went on. We had a kindly nurse that would try to take baby so I could try to sleep, but it didn’t help much. No one had told me/warned me about the feeding frenzy that occurs around 24-36 hours after birth, where baby goes a bit nuts feeding to kickstart your supply. My poor girl was so hungry and would wail every time she was taken off the boob. Next door to me another mother was in the same situation but her baby was so much more vocal in it’s distress. I should point out that there only seemed to be one lactation consultant per shift at RPA Women and Babies, which I found quite surprising. So in effect, we didn’t get much attention.
All of this resulted in a hideously damaged nipple that didn’t heal for ages, and a baby that was rapidly losing weight and very, very upset (though we didn’t know at the time as they don’t weigh the babies until you’re about to leave). With no sleep, and recovering from a very unexpected caesar (I was meant to have my baby in the birth centre) breastfeeding was HARD. Really fucking hard. But, I felt like I had to persist. If I couldn’t have my natural birth, I was damn well going to feed my baby!
So horrible wizened, hunchback nurse, bought in breast pump, gave me a quick run down on how to use it, made me sign consent form to give baby formula (which resulted in one contented baby) and left me to it. And thus began the merry go round: feed, pump, feed expressed breast milk, formula top up
I was in so much pain, not from the ceasar but from my damaged nipples. And, I felt an absolute failure. But I kept going. At my home visit with the community nurse, she checked my nipples, promptly told me to stop feeding with the damaged one till it healed and to pump only, and to go visit the breastfeeding clinic in Glebe, and told me fenugreek would help. She was a lifesaver. So was the clinic. They fixed baby’s attachment and got me sorted. I researched lactation cookies (secret ingredients: brewer’s yeast and linseed meal/flax), and got myself some tea. I drank the tea, ate the cookies and pumped like it was going out of fashion to establish my supply. It took about 3 months (I think: this whole beginning bit is pretty fuzzy).
I was so proud, and happy when I got my supply up and was able to drop the formula.
And it’s why I’m so sad that I didn’t get to enjoy and cherish my last few breastfeeds with my little monkey.
I had no idea I would feel so sad about it. I guess maybe it’s about the separation of parent and child? She’s not my baby anymore. She’s a sparky little toddler and doesn’t rely on me in the same way anymore.
I love this image, because it sums up for me in so many small details why I love breastfeeding: the intimacy, the tenderness, the nurturing, and I love that it’s not a tiny baby.
I really, really hope I can breastfeed another child. It really was the most amazing and bonding experience in spite of the difficulties we faced early on.
So this week I wrap up my Michelle Bridges 12 week Body Transformation Program.
So I just wanted to revisit where I was when I started and see what’s different:
By the end of the 12 weeks I hope to be back exercising regularly and getting over my apprehension about my bodgy knee, eating better (and saving money through better meal planning [fuck, who am I kidding, I've never planned our meals!]) and getting some routine and structure back into our lives.
I’ve started scheduling my gym visits into my calendar, and I’m trying to, once again, kick my sugar addiction (though I don’t think I’ll ever be able to quit sugar). I’m going to take the time to look after myself better so I can take better care of my family.
Exercising regularly: Check! I’m going to the gym a minimum of 3 times per week. I am extremely fortunate the my local gym has a creche So I can take the baby and not have to figure out a way around that.
Routine and structure: Yes, in combination with work, and when I stay on top of the diary we have a good routine and structure.
Getting over bodgy knee apprehension: Sort of. I think this one will take a while. In the meantime, I’ve tried out Zumba and Spin classes which I’ve quite enjoyed. I’ve modified classes and activities where I can to take into account knee. So I don’t jump around at Zumba, and I simply have to accept that I can’t run. At all. :-(
Eating Better: Yep, portion sizes are smaller, and eating a wider variety of fruit and veg.
Meal planning: Luckily the program takes care of this so it’s a no brainer. HOWEVER, actually getting organised can be quite difficult. So trying to stay on top of meal planning, diarising and getting the shopping done in preparation for each week is quite hard!
Kicking the Sugar addiction: Fail. I love sugar. This point is not a total write off though. I only have 1/2 teaspoon of sugar in my coffee and a wild treat for me is a skim mocha made with actual chocolate from one of my fave local cafes. I do also love my fruit.
So far I have lost about 7kg give or take, and increased my fitness a lot.
So, in conclusion: a very successful program even somewhat modified to meet my own circumstances.
I’ve signed up for the next round, and this time I aim to lose another 5 kgs, and really ramp up my fitness.
Did I get my mojo back? Hmm, not quite, but I’m well on my way!
I’ve had a hell of a time with Centrelink and The Immunisation Register , and I’m a bit annoyed by both.
But before I start, a caveat: My child is fully immunised but we have delayed some of her shots and spaced them out. Some of this has been unintentional, for example shortly after she started childcare we were all sick for weeks and had to keep putting off appointments. Something that must happen to a lot of people. But we’ve also made a choice to space out her immunisations, especially those that are stacked, i.e. multiple vaccines in one shot. By spaced we sometimes leave 7-10 days between them
Centrelink cut off my Childcare Rebate without telling me . Well that’s a lie, they did tell me in a really brief and vaguely worded letter that didn’t mention the Childcare Rebate at all, so I had absolutely no idea what it referred to, until I got a $1000 bill from our childcare centre. They did this because they thought my child hadn’t had one of her 4 month vaccinations. ONE of them. This happened in September 2012, before she turned one. 7 months after her 4 month vaccinations.
At the time this occurred, I contacted the Immunisation Register, and they refused to take the details over the phone, which is fair enough. I got the relevant paperwork, filled it out and sent it off. Nothing. I then contacted my Doctor who sent through the info again from her end. The Immunisation Register got it this time ( I only found this out because I called them again). However, Centrelink did not. As to be expected, there was no communication from either agency updating me on the status of the issue. So between September and November I kept trying to submit the information to both agencies. I was then required to take evidence of her up to date immunisations to a Centrelink office. So I trooped off and did this on November 28. When I submitted the paperwork to the Centrelink office, I asked what the process was and if I would be back paid, how long it would take etc…The gentleman that took my form said he “had no idea, I’m just going to take a copy and submit it to the team”
Each time I contacted either organisation, they blamed each other for the stuff up: The Immunisation Register claims that Centrelink simply “access their database of information when they want to” and “we only process this information in our Tasmanian office, and it overloads to the Perth office when they’re too busy”
When I contacted Centrelink they put the blame squarely on the Immunisation Register, saying they were “months behind in processing, and this happens all the time”
So it’s now early January 2013, and I still hadn’t heard a peep from Centrelink. So I called, and waited 52 minutes on the phone before speaking to someone. (This is the second time I’ve called: I called before Xmas, Centrelink admitted a “technical issue at our end which isn’t letting us restore your payment, and we’ll get the team on to it, and call you back in an hour” surprise, surprise, no call)
This time I got a completely different story saying that there was simply a delay in processing as “we were really busy before Xmas and then there was the Xmas break, which has put things further behind” I explained my frustration and the different stories I’d been fed from the two different agencies as well as the previous contact, I also pointed out that I had submitted the paperwork at their office in November a month before the Xmas break. At this point I asked to speak to someone more senior. The reason for this was twofold: when I asked what I could do to resolve this issue and asked if going to a physical Centrelink office would be of any use, they said no. So I asked if there was another team/person that could more directly assist (as in someone who was closer to the processing to give me a clearer picture of what was going on, clarify the different explanations), she also said no. Now I didn’t lose my cool at all, I didn’t rant, I didn’t raise my voice, I actually kept apologising and asking what I could do to fix the issue. No luck. I eventually got a supervisor. Unfortunately the supervisor was no more help than the other staff member. In fact she started saying, that yet again, according to their records that my child’s immunisations weren’t up to date!
*Big deep breath* I asked the supervisor, Julie I think her name was, to please stick to the original problem, the processing of the information I had submitted in November that showed that as of 28 November 2012 my child’s vaccinations were completely up to date, to account for the period September-December 2012 where the Childcare Rebate hadn’t been paid.
I then asked if there was an alternative. An alternative? Yes, an alternative to this madness. Yes, claim the rebate in retrospect at the end of each financial year. In addition by submitting a “Conscientious Objection Form” to the Immunisation Register, I would cease receiving threatening letters from Centrelink/Immunisation Register about my child’s immunisation. PLEASE NOTE THAT MY CHILD’S IMMUNISATIONS ARE UP TO DATE
That was pretty much the end of the call.
Now, there are a couple of issues that bug me about what’s happened:
- What happens to people who are super reliant on that rebate to be able to have their child in care in order to work? How could they possibly pay the amount I got slugged with ($1k)?
- What’s wrong with the Immunisation Register’s systems that mean they are so behind? Is it a technology issue? A staffing issue? I know my doctor submits all the info electronically linked with our medicare numbers etc, so what info is being “processed”? There was a 7 month gap between when the register thought she had missed a vaccination and contacting us. Surely that’s not ok?
- The letter I got from Centrelink advising me that the rebate had stopped said nothing about the rebate at all. It said that my benefits were being cancelled. But I don’t receive “benefits” It was only on the phone with centrelink when they told me the date of the letter and I cross checked that I realised what it was trying to say!
- The threatening letters saying that “your child MUST be immunised”. No arguments there, but the tone of the letter is very stern and for those less sophisticated or knowledgeable, rather bullying. Again, to clarify, I am NOT anti-vaccinations. Just pro better user experiences!
- The fact that my child is fully immunised and that I felt compelled to submit a Conscientious Objection form is pure nonsense! But it appears to be the only way to stop the letters.
I feel VERY conflicted about writing this blogpost as the rebate is very much what is popularly dubbed “Middle Class welfare” and I should shut my trap about it; but it allows me to work in a rather lowly paid job that I really like, rather than a more highly paid job that I loathe. But I can’t help but think the issues above are worthy of discussion and further investigation.
What do you think?