FNZ conference

Fertility New Zealand Conference - Thank You !

Our Conference on Saturday the 20th of June was an amazing success. We had over 220 attendees and a huge variety of speakers, the feedback we have had has been incredible, thank you all for the time you have taken to write in.

Can we please thank, all that attended, the speakers and our sponsors.

Please find below the article that was written by Nicole Evans for the NZEM Support Group http://www.earlymenopause.org.nz/. Nicole has kindly offered her article for us to put on the website for all to read. This is a wonderful article from an attendees perspective and I am sure you will enjoy the read as much as we have.

FERTILITY NZ CONFERENCE 2009

Saturday June 20, Sky City Convention Centre

I only found out about this conference three days ago and was very lucky that the lovely Tiffany at head office made room for me to attend even though it was fully booked. I’d say there were over 200 people there and apparently they even had people turn up on the day and they’re so lovely they couldn’t turn them away. That’s the sort of organisation we’re talking about, and I’m so impressed with their generous attitude.

They’ve agreed to put up a link to our site on theirs and I’ve updated their entry on ours. I haven’t had anything to do with them up to this week, but today witnessed them fulfilling their mission statement: “Fertility New Zealand is committed to supporting, advocating for and educating all people who face infertility challenges at all stages of their journey and beyond”. This is a great organisation, run almost entirely by volunteers, and I intend to have a lot more to do with them from now on.

The president, Karyn Floyd, introduced herself and welcomed us to the conference, remarking how happy she was for the outstanding attendance. She also introduced us to the ‘dummy campaign’ they’re running. For $2 you can buy a dummy, write your name and address on the attached card and they’re sending them all to the Health Minister, Tony Ryall, to petition for three government-funded IVF cycles (more about this later). I think this is a very novel idea, bound to make an impression on the minister.

We started with an opening ceremony that helped us come together as a group. We each were asked to pick up some rock salt and drop it in one of two large glass bowls of water: life-sustaining water and the preserving properties of salt, together representing the tears of grief and the soothing action of the ocean. They then lit a candle to light our way as we reflected on what we wanted to get out of the day. I thought these were very fitting ways to calm everyone and help us focus on why we were there. They ended with advice on being patient with the questions of life that we have no answers for, as the journey is as much a part of life as is finally reaching your destination.

The first key note speaker was well-known TV chef and fertility spokesperson Allyson Gofton. She was incredibly open as she shared with us the very difficult road she and her husband have travelled to create their family. Their youngest is 3 years old and she still got teary as she recalled the highs and lows; highlighting that infertility is not something you ‘get over’ - it’ll always be a part of who we are.

She had a lot of very sage advice for people going through IVF:

• You need someone to love you through IVF – your partner of course, and anyone else you need
• Love knows no boundaries – regardless of how you create your family, love can overcome all obstacles
• Stop when your heart gives out, not your brain
• Don’t lose your sense of humour
• Leave your modesty at the fertility clinic door
• Remember you married your spouse for who they are, not their gametes!
• Look after each other, be each other’s best friend

Her most important message to those who haven’t started trying to have a family (obviously no-one at this conference): DON’T WAIT! You can always work; you can’t always have a baby. I wish I’d heard that message a lot earlier.

Morning tea followed this incredibly moving first speech and I met Anna*, a woman who’d come up from Christchurch for the conference. Like me, she was there without her husband (men really don’t like talking about this stuff, do they!) so we hooked up and hung out for most of the day which was really nice. I took some NZEM flyers with me and did a swap with all the stall holders to spread the word about POF/Early Menopause and our group. There were a few different stalls all offering lots of information and we had a good look round: Natural Fertility NZ; Mother-Well Natural Health; Fertility Associates (with free copies of “Making Babies” by Mary Birdsall, so that book is now in our library); The Women’s Book Shop (they have a great range of books you can order from their site (www.womensbookshop.co.nz); and Repromed fertility clinic.
(*Not her real name)

After morning tea we were able to choose a workshop from four options. Both Anna and I had chosen “Coping with infertility” so we headed in. The speaker was the president again - fertility counsellor Karyn Floyd - and she pretty much gave us a free counselling session. The sub-heading was “Managing your grief” and she showed us how to do that in various ways.

She began by explaining what infertility does to us: robs us of laughter; is a rollercoaster of emotions; has no definite end in sight; our plans feel ruined; our assumptions about our life are shattered. She then went on to explain what you lose: privacy (doctors know more about you than your best friend); a dream (at least the way you thought it would be fulfilled); self esteem and confidence (that sense of ‘failure’); money (treatment costs); innocence (possibly the first time you realise bad things can happen to good people); movement (life in limbo during treatment).

All these losses lead to a real grief. In her 1969 book “On Death and Dying” Elisabeth Kübler-Ross identified the five stages of grief: Denial; Anger; Bargaining; Depression; Acceptance – although not everyone experiences all of them and not necessarily in that order. Karyn pointed out that with infertility there is no end. Therefore we’re in a state of ‘chronic grief’. Some may say that time heals all wounds, our response could be that time is the problem. Karyn tweaked the 5 stages a little, replacing ‘bargaining’ with ‘guilt’ or ‘shame’ that can be very isolating.

She pointed out the symptoms of grief just to clarify for us what we know we’ve already been through: lethargy; headaches; irritability (making mountains out of molehills – I certainly identified with that one); sleeplessness; sadness; lack of concentration; anxiety.

On top of this grief, we all get told the ‘Infertility myths disguised as helpful advice’ that well-meaning people utter: “just relax and you’ll conceive”; “just stop thinking about it”; “stand on your head after sex and you’ll get pregnant”; “adopt, then you’ll conceive”. She reckons they called all be Tui billboards – each of them need that “yeah right!” on the end.

After identifying the causes and symptoms of grief, she went on to describe some coping mechanisms. She started by explaining that the ‘fight or flight’ reflex is always switched on in infertile people: every pregnant belly, every baby reminding you of your pain. Apparently it’s quite normal that infertility clouds your whole world – that was quite re-assuring to me as I sometimes wonder if I should be ‘getting over it’ by now. Focussing on infertility means we don’t see the other good stuff in our lives and our thinking tends to be coloured by our grief (e.g. putting ourselves down and forgetting our achievements).

So, now Karyn moved on to the coping mechanisms.

What you think changes your feelings; your feelings determine your behaviour; and your behaviour affects your body. It all starts in the brain, so, number one on the list:

1.     Challenge negative thoughts

• Be aware of them – know what actions/feelings you display when thinking negatively and try to pinpoint what that inner dialogue was saying
• Talk to yourself as you would a friend
• Look for evidence that your thought is irrational
• STOP! Ask yourself, is this thought helping my situation?

2.     Relaxation

• The stress reflex may be automatic, relaxation isn’t
• Abdominal breathing
• Yoga
• Guided meditation
• CDs that help calm your mind
• Muscle relaxation
• Mindfulness – stay in the moment. Notice the details of now – stop racing into the past/future. Go for a walk and take time to see the trees and birds etc.
• Minis – deep breathing throughout the day to keep the stress levels down

3.     Self Care ideas

• Exercise and nutrition
• “Me” time – 30 minutes a day for you (worrying time, crying time etc.) so you take back some control of those emotions. But put a time limit on it and plan for something nice at the end.
• Journalling
• Movies
• Closing comments:
• “It’s ok to feel this way”
• Get support – counsellor; Fertility NZ; friends; family; support group
• Do what’s right for you – avoid babies or don’t; cry or don’t. It’s up to you. (Phew! I thought I had to be wonder woman and just cope with everything!)
• Develop a coping plan – for the dreaded 2ww; for pregnancy announcements etc.
• Be kind to each other (echoes of Allyson Gofton’s talk)
• By changing negative thoughts we become happier, healthier and more in control

When Karyn had finished we were free to ask questions or just chat, and one lady shared with us that infertility is something that never ends. She and her husband did IVF for 10 years, had some success and then decided they were finished with it, but there are still events that trigger the old emotions. In response another lady said when she hit menopause she began to feel better as she suddenly “re-entered society” in a way and was on a par with her peers on the fertility side of things. At first I thought, well that’s all well and good for you, but what about us already IN menopause AND dealing with fertility treatment? (Getting on my high horse as I do!) But on reflection, I think the pain of the premature menopause will subside somewhat for me when my friends get there, so I do take some comfort from that thought.

Another topic we got onto was the feeling of being in limbo and Karyn’s advice was to stop thinking about the future, be in the moment, realise what you ARE achieving and stop looking at the shattered dream. Think positively (i.e. realistically) and be kind to yourselves.

Phew, another emotionally-charged session. Time for some lunch! So we went and found the delicious smelling buffet that was our lunch. The food was amazing and I’m sure this alone would’ve cost more than the $30 charge for the conference, without adding all the freebies we got in our goody bags – incredible value-for-money! The organisers got as much sponsorship as they could and subsidised the conference because they know how expensive fertility treatment is and they wanted as many people as possible to be able to attend.

Anna and I chose different topics for the afternoon workshop, so we went our separate ways for a while – taking notes for each other.

For more information on the various government requirements discussed in this section, please visit the ACART (Advisory Committee on Assisted Reproductive Technology) website – the guideline documents are concise and easy to read: www.acart.health.govt.nz

The first part of my session was “Embryo Donation”, given by two women from AUT: Dr. Sonya Goedeke from the School of Psychology and Dr. Deborah Payne from the Centre for Midwifery and Women’s Health Research.

Embryo donation has been available in NZ for a little over 2 years now, but so far, there have been only ten cases approved by ECART (Ethics Committee on Assisted Reproductive Technology), and only two births. There are strict rules and regulations:

• Donors can only donate embryos created from their own gametes and they must have completed their family
• Donors can only donate to one recipient family
• Recipients must have a medical condition affecting their fertility and will be subject to a police check
• Counselling required (individually and joint)
• Both parties must obtain legal advice

In the counselling, here are some of the issues that will need to be addressed:

The genetic connection between the donors and resulting children

• Openness and honesty all the way through appears to be the best approach for the psychological wellbeing of the child, according to adoption and donor gamete research. It allays fears of the unknown and protects the relationship between the two families.

Issues affecting donors

• It’s a couple’s full genetic make-up
• An ongoing sense of connection and responsibility
• No legal status
• Want to save their embryo

Issues affecting recipients

• Lack of genetic connection
• Child’s access to information
• The ‘threat’ of the donors
• Want to experience pregnancy, birth, breast feeding, parenthood from day one

Issues for both parties to consider

• What if a disability is picked up in a scan?
• What if there’s a miscarriage?
• What if the child is born with a disability?
• Rigorous counselling assessment to get through
• How will this affect existing family relationships?

Issues affecting the children

• Why was I given up?
• Was I the ‘reject’ embryo?

This is a very unique way of creating a family with the possibility of positive outcomes for all if properly thought through, but negative outcomes if not.

The second part of the session was called “Recruiting Donors and Building Relationships”, given by Sue Saunders, a counsellor at Fertility Associates in Hamilton. This talk covered sperm/egg/embryo donation and surrogacy.

There are many ways to find a donor:

• Friend/family member
• Littlies magazine
• Web sites (www.treasures.co.nz, www.aussieeggdonors.com; www.nz-surrogacy.com)
• Clinic recruited donors (fewer and fewer these days)

Under the HART (Human Assisted Reproductive Technology) Act 2005, at 18 years of age all children can find out their donor’s identifiable information. Donors do not have this right about any children born from their donation.

Some issues to consider when looking into donated gametes/embryos:

• Your relationship with the donor
• Get initial info – family size, completed, healthy, non-smoker, age, location
• Who needs to know you’re pursuing this option?
• Keeping communication open and honest is the best way
• Who to tell, so you can tell the child

In the early days, it’s important to carefully build the relationship. Here are some tips:

Begin slowly

• Multiple small contacts more useful – allows processing
• Don’t commit too early
• Meet if not friends or family
• Sort out boundaries – contact, who to tell etc.

Things to sort out

• How to ask for information in the years to come
• What the child can/can’t tell those outside the family
• Future contact arrangements
• Communication

Be aware this all takes time. The clinics go slowly on purpose so you have enough time to think through all the relevant issues.

Surrogacy is quite a different kettle of fish:

• You need to find your own surrogate
• You need to have a relationship BEFORE treatment starts and it must be ONGOING afterwards (I didn’t get a clear answer why this matters in surrogacy but not the other ‘donor’ options)
• You must complete the CYFS adoption course before you start as you will have to adopt the child after it is born, even if it carries your DNA.
• ECART must approve every case
• All parties must be able to cope with the implications of the outcome

As with gamete and embryo donation, under NZ law there can be no payment to the surrogate for anything outside her medical needs. However, small gifts are allowed.

In the chat time after the two talks someone raised the difference between sperm donors and other donors: sperm donors are not part of the counselling process whereas egg/embryo donors and surrogates are. The answer Sue gave had three elements:

1. There is a bigger time lag between their involvement and the birth of any baby. Sperm must be quarantined for six months after donation and might not be used for a while, thereby distancing the donor from the process.
2. The man won’t necessarily live near the recipient as his donation is available to anyone in the area his clinic covers.
3. Men are different and are generally not as interested in the outcome as women/couples.

Another interesting topic was that under the HART Act donors are allowed to choose who gets their donation, whereas in society, discrimination is an offence under the Human Rights Act. This apparent problem was solved when Sue told us that the HART Act sits above the Human Rights Act.

I found this session very interesting as I am simply fascinated by the repercussions of Assisted Reproductive Technologies. (We have a book in our library: “Mommies, Daddies, Donors, Surrogates” that addresses a lot of these issues, if you’d like to follow up on any of this stuff.)

From that session we went straight into the second key note speaker: Dr Wayne Cutfield, Paediatric Endocrinologist at the University of Auckland LigginsInstitute. His talk was very technical and I don’t trust my notes enough to give you the facts and figures, but I will pass on a rough outline of what he shared with us.

The Fetal Origins (The Barker) Hypothesis: The origins of adult disease begin in utero

• High and low birth weight are both related to increased risk of diabetes later in life
• Prematurity affects the next generation, especially through the paternal line
• Under nutrition of the mother around conception leads to pre-term births
• Malnutrition increases the baby’s risk of heart disease and obesity in 1^st trimester; chronic lung disease in 2^nd trimester; diabetes risk in 3^rd trimester.
• Famine affects at least two generations: children of mothers born during a famine are generally heavier. (It’s all our parents’ and grandparents’ fault!)

IVF children are physically and biochemically different (see the June North & South magazine for an in-depth article on this)

• In developed countries, 1-3% of children are born via IVF
• IVF children are taller, have increased growth hormone and lipid levels (a good thing)

Why? Several theories:

• Culture medium
• Ovary stimulation drugs
• Best embryos are chosen
• Characteristics of the infertile couple

More research needed into:

• Effect of diet around conception and IVF outcomes
• Effect of ovulation drugs on the embryo
• The ‘Best Embryo’ theory
• Environmental oestrogens in the lab (i.e. plastics etc.) The Liggins Institute will be studying this in Zebra fish.
• Maternal age

This is all cutting-edge scientific research happening right here in NZ!

In the chat time at the end of the talk, Dr. Cutfield was asked about the cause or effect of morning sickness in pregnancy and he said he wants to do research into that.

He shared research findings with us that regular exercise in pregnancy results in significantly lighter babies, which is good if the baby’s at risk of being overweight, but an underweight baby is more of a worry.

Then we got onto the topic of the ‘overcooked’ baby and Dr. Cutfield said there’s a study coming and it looks like it’s a bad situation as the womb becomes a less ideal environment once the baby is past full-term.

And the final question: what about the environmental effect (epigenetics) of a donor egg going into a recipient’s body? Cutfield: probably not an issue, and there’s no evidence to suggest that we should begin genetically matching donors and recipients as we would an organ donor.

It was all fascinating stuff, but I found it a bit tricky to grasp the medical lingo as he spoke!

Both Anna and I found that session very interesting and over our afternoon tea we continued thinking about the epigenetics bit at the end. I said my “thank yous” to the organisers and they gave me a whole bunch of their newsletters and pamphlets to hand out to all our members, so I’ll be doing that over the next few weeks. Anna had to leave for Waiheke Island so we said our “goodbyes” and I promised to take some good notes for her in the final discussion panel coming up next. Politicians at a conference held by a lobby group– sparks could fly!

So, on the panel was:

• Dr Richard Fisher from Fertility Associates [RF]
• Dr Guy Gudex from Repromed [GG]
• Sue Saunders, counsellor with Fertility Associates [SS]
• Sue Moroney, Labour Party Women’s Affairs Minister [SM]
• Dr Jackie Blue [JB] and Dr Paul Hutchison [PH], National MPs on the Health Select Committee

Q: Why is IVF so expensive?

A: [RF] We provide a 7 day/week service and pay international prices for drugs.

Q: Why is government funding not unlimited like in Australia?

A: [JB] There’s only so much money.

[SM] It’s all about priorities, so keep lobbying to keep the cause fresh in the politicians’ minds.

[GG] It would help if insurance companies covered it – premium increases not huge if spread across all members. Incidentally, government funded cycles bring in less money to the clinics than private treatment and clinics tend to run on a 10% profit margin only.

[JB] Keep lobbying, a third cycle is being considered.

IDEAS:

• Parliamentary petitions – if it’s a substantial topic they’ll look at it
• Write to MPs
• Talk to the media. If it’s on the nation’s mind, it’s on the government’s mind.

General discussion to clarify waiting lists: urban areas longer 10-12 months;Dunedinjust 3. Do we need to increase the cut-off age because of the long waiting lists?

Ideas to shorten them:

• Increase funding
• Reduce numbers accessing treatment

Q: Is the government focussed on preventive measures, before people need medical help?

A: They all agreed more education was needed.

Q: Fertility NZ (FNZ) helps the clinics; will the clinics increase their support of FNZ?

A: [RF] We give $20,000 annually – quite substantial already

A: [from a FNZ committee member] We don’t want to be seen to be in the pockets of the clinics, we need to remain independent to retain our integrity.

Q: Why is there so much bureaucracy around adoption and so few international countries we can adopt from?

A: [JB] We’ll look into it.

[PH] The legislation is 50 years old and a private members bill is in the pipeline.

[FNZ President] We’ll chase you for information on that and post it on our website.

Q: The adoption process is so lengthy, why can I not begin this while doing IVF?

A: [attendee] In Wellington you can do everything except put your profile in the pool.

[FNZ President] We’ll get a response from CYFS on that and post it on our website.

Discussion about the Ministry of Health’s (MOH) points system for publicly funded treatment:

• It’s better than nothing but not perfect
• The list is reviewed annually but if you advantage one group you always disadvantage another
• The 5 year wait for treatment for ‘unexplained’ infertility is unfair
• If access to treatment was easier there would be even longer waiting lists
• 37.5 years is the average age of treatment. RF said he’d ask MOH to outline what they might change the scoring if they could.
• FNZ President reminded everyone to back the 3+ campaign (increase government funding to 3 cycles, reduce waiting for treatment time to 3 years maximum; 3% of all babies born via IVF like other countries). Details on the ‘Thank you for joining’ page on their website.

Q: Why don’t we privatise sperm banks?

A: [SS] Privatisation = secrecy and the child not knowing its origins. A child deserves to know where it came from. Let’s not go there.

Q: Why can’t people in smaller communities choose where they have treatment?

A: [RF] Funding is split between the DHBs and they each decide where the money is spent. We need a national funding system to get rid of this problem.

Q: If private treatment is quicker, could we have a system where we pay and then ask the DHB to reimburse us if we qualify for government funding?(A cheeky question, but one we all chuckled at!)

A: [RF] It would only compound the problem: private treatment keeps the public list as short as it is.

And that was the end of the day. The closing ceremony was a nice time to reflect on what we’d learned through the day and think about letting go of fertility issues as we head back out into the world. We were all asked to write down one word that summed up the day for you. Mine was INSPIRING. I met some wonderful people, heard some absolute professionals discussing topics of great interest to me, made some connections for NZEM and learned there is more I can be doing to improve ‘the system’.

The fertility journey was likened to a labyrinth and we were each given a sheet of paper with a maze on it. We were asked to take a few minutes and trace a path from the entrance through to the middle. While we did this we were to reflect on our fertility journey and just see what came to mind (memories, opportunities, ideas etc.) as we wound our way through the maze. I was quite surprised at the effect this seemingly unremarkable activity had on me. I’ve copied the maze at the end of this document and I encourage you to try this exercise yourself and see what you discover.

We were reminded that although it may cloud our vision (or even our every thought some days) fertility is only a proportionally small part of who we are and we mustn’t lose sight of successes in other areas of our lives.

They closed with the Apache Blessing which is a beautiful prayer. It was read at my mother’s wedding and she read it at mine. She passed away just over a year ago now and the wounds are still quite raw, but it was quite nice to feel her there with me at that moment as I headed out into the evening.

So all in all, a very worthwhile day and I’m so glad I was able to attend. I hope I’ve given you a good sense of what it was like as it made such an impression on me.

I encourage you to join Fertility NZ – it’s FREE and more members mean more sway with the politicians. Please sign up with www.fertilitynz.org.nz today and make a difference!