Who are we, and why do we need surrogacy?

 

Age 35 : Survived cancer twice. Now in remission and wants a family. No children.
Age 36 : Severe fibrosis followed by multiple failed IVF cycles. Dr. confirmed that the patient would be unable to fall pregnant when she was 35. No children.
Age 31: Emergency hysterectomy aged 26 as a result of eclampsia/organ failure/hemorrhage during childbirth. One child aged 4.
Age 34: Severe post-partum hemorrhage and uterine inversion resulting in emergency hysterectomy at 34. Still 34 now with one six month old baby.
Age 38: Rare blood clotting disorder that causes deep vein thrombosis when pregnant. 3 failed pregnancies, each resulting in massive clotting with risk of stroke, heart attack, death. Began trying for children at 29. Recently recommended for surrogacy after another failed pregnancy and blood clotting episode. No children.
Age 40: Autoimmune disorder, antiphospholipid antibody syndrome. This caused the death of two of three boys (pregnancies). Now has a mechanical mitral valve after 2 open heart surgeries and is on warfarin which is counter-indicated for pregnancy. One child aged 4.
Age 34: Heart-double lung transplant recipient age 24 required due to developing pulmonary hypertension and right heart failure which resulted from a ventricle septal defect at birth. Risks of carrying a child include birth defects, very high risk of miscarriage, kidney failure, very pre-term delivery. No children.
Age 30: Cardiomyopathy (heart failure). Patient is healthy on drug therapy but cannot carry a child as she will have a heart attack or stroke and most certainly will die. Additionally the drugs are also not compatible with a developing baby. 21yrs old at age of diagnoses. Have been trying a number of options to have a baby for the past 4 years. No children.
Age 38. Heart transplant at age 26 due to a virus. No children but surrogate currently 9 weeks pregnant and all looking good for a birth due 26th November.
Age 35: Born without uterus. MRKH syndrome. Diagnosed at 17. No children.
Age 29: Hormone positive breast cancer at age of 26, had a mastectomy, did chemo, hercepton and radiotherapy. Cannot risk a pregnancy because of high chance of recurrence and on breast cancer medications that cause deformities when pregnant.
Age 35: Marfan Syndrome. Open heart surgery at 32 to replace aortic valve and entire ascending aorta. Life long warfarin therapy which is counter-indicated for pregnancy. Twin boys now aged 3 yrs born through surrogacy at age 35 on 4th and final attempt.
Age 27: Numerous clots. Clotting disorders- Antiphospholipid syndrome, prothrombin gene mutation g20210a and lupus. Age 16 when first diagnosed. No children.
Age 35: Emergency hysterectomy at 35 during childbirth. Have 10yo and 3yo sons. Did IVF for 6 years to have 2nd son (genetic condition means only 1 out of 8 eggs are viable). “Our daughter is in heaven”.
Age 30: Diagnosed with rare autoimmune disease (Takaysu’s Arteritis) at age 24. Waiting for open heart surgery and will be on medication that is counter-indicated for pregnancy. No children.
Age 32: MRKH Syndrome born without a uterus. Diagnosed at 17yrs. First gestational surrogacy attempt at 30yrs resulting in 1 child (now 22mths), lost her twin. Second attempt lost baby at 17wks.
Age 29: MRKH Syndrome diagnosed at 16 age. No children.
Age 42: MRKH Syndrome diagnosed at age 6. Not only not a full kidney but no uterus, no fallopian tubes, no cervix but thankfully has ovaries so did IVF last year & have 6 embryos ‘on ice’.
Age 27: Breast cancer, recurrence in lymph nodes when pregnant with son at 26 years old. The cancer was estrogen receptive, so doctors advised to not get pregnant again and that removal of the ovaries was a good idea to lower the estrogen to ensure no more recurrences. Full hysterectomy. One 8 month old child.

Surrogacy in Australia

1) Medicare needs to be given to women undergoing IVF for surrogacy to make it easier for people to conduct surrogacy in Australia where we have superior medical facilities and surrogacy is conducted among economic equals. Read this blog to see real life surrogacy stories. We are everyday women who deserve the chance of a family just like anyone else.

2) People are heading overseas to Thailand etc, in part, because Australia makes it so hard. It’s complicated, and there are not enough protections for Intended Parents or Surrogates. There needs to be clearer regulation to ensure that a surrogate and a surrogacy patient understand what their rights and responsibilities are. Banning surrogacy is not the solution – it will only drive it underground.

3) Altruistic surrogacy is legal in Australia, after careful screening with psychological reports & in many cases police checks. Parents need to be deemed suitable, as do surrogates. A judge awards the parenting order after the baby is born, in a court.

4) We have a community of women undergoing surrogacy who all have legitimate medical reasons for needing surrogacy.  We are cancer survivors, or born without a functional uterus, or have some other serious medical condition that means we rely on the goodwill of another woman to have a baby. Our community supports women through cancer – we have giant pink ribbon days and our sportsmen wear pink – then what? We survive, thrive and want to have a family, and our community stops supporting them – there is no Medicare available when you want to have a family. This is clearly unfair and needs to change.

5) In Australia, discussions about genetic abnormalities and the risks in birth are completed with a psychologist and written in a contract. The baby Gammy story would not happen because we ensure that there is support for all involved. This is why we need to make surrogacy easier in Australia. A good start is giving women Medicare for IVF procedures for surrogacy.

Feeling the Medicareless pinch

Facing the financial strain of IVF without Medicare is a real challenge. This is one of our member’s stories.

It’s no secret that dreams take hard work, and some dreams take more hard work than others. This is what I think about when I rise for work at 5 am, ready to go to the Police Force, and take on the day’s duties. Dreaming about my partner’s face, holding a baby in his hands, is what I work hard for every day.

It’s a common dream – it’s one my colleagues and I talk about at work. Family is a big topic amongst my friends and I. I’m surrounded by family-loving people, dedicated to their families, our society, and our friends, and yet my situation is so different.

I’m struggling to make a family, through the only method I have available to me – IVF. You see, a few years ago, I had a medically necessary hysterectomy. I had two simple choices – remove my uterus, or face ongoing debilitating pain and suffering that impacted every aspect of my life. That’s not really a choice, it’s a situation one finds themselves in that has no care for whether or not you’ve made plans for family.

One of my friends is going through IVF. Because she has a uterus, she gets Medicare benefits. She goes to the same clinic I go to, and has just received a letter advertising that her out of pocket expenses will be $1250. Her second cycle will be $650. Her transfers are included in the costs. She can afford to do the recommended 3 cycles of IVF in which to gain a baby.

For me, one cycle costs $12,000. The transfers cost $4,000. So I am eating budget mince, and putting off the home loan repayments.  All of my money from many months of pay (and I mean ALL of my income) will be going toward making my dream a reality. What choice do I have?

Which is why I know as I struggle to pull together another meal from the cheapest mince I can find, padding it out with carrots ($1 a bag) and grated on-special vegetables for another daily staple of spaghetti bolognaise, that our situation just isn’t fair.

I want to create a family with my partner. He’s a loving man who will be a fantastic dad, and he really, really wants to be a father. It’s a natural enough desire, isn’t it? He also grew up surrounded by people that value family.

One late night, my partner said; “I’m in a lose/ lose situation with you. If I leave you, who’s to say I’ll ever meet someone I love as much as I love you, to have children with? If I stay, I may never have children…” It was heartbreaking in the truth.

Sometimes I’ve thought – “Maybe I should just do the kind thing and tell him to leave me, and find a woman that can give him a baby without needing surrogacy. Maybe that’s the kind thing to do?”

But I won’t give up. Which is why every meal is spaghetti bolognaise. Every cent of our income is going into IVF. What’s hardest is knowing that it needn’t be like that.

This is the real life impact of the government’s lack of action. It makes me so angry. I’m angry that I have to pay so much more than my friend. It’s hard to see others succeeding when they have such affordable access to medical treatment. Especially when it’s completely obvious that I have no other option but to seek medical treatment to have a baby.

There’s no other pathway for me. IVF is my ONLY way to have a baby. So why am I excluded?

What would you do? Give up on your dreams? Let your partner go and live a solo life? All because the government hasn’t updated its law to include you in a sentence of legislation…..?

I’m not about to give up yet, but I’m growing weary, and I’m running out of funds. If this transfer doesn’t work….I am not sure I can go on living like this. I’m making every sacrifice I can for our dream, but that feeling of being a part of a system that is so unjust is so….well….I don’t even have words for it. It’s so upsetting. Every day it’s upsetting. In the supermarket it’s upsetting. In the office it’s upsetting. I sit in the car and think about it. I can’t escape this feeling.

In the end, I just want to be a part of a family. I want to share what others have in an everyday, normal way. I want my partner to be a dad. And I want equal treatment to a woman with a uterus. I’m not half a woman. They took my uterus but they didn’t take my dreams. Well, not yet.

Surrogacy Myths: Protecting the body beautiful

Some surrogacy myths fly in the face of logic. One of these myths is that women who choose surrogacy do so because they want to protect their beautiful bodies. They are concerned with stretch marks, getting ‘fat’, and other visible signs of pregnancy.

While this may be a concept for the incredibly rare case of a select few celebrities, overwhelmingly the reason even celebrities choose surrogacy is because of medical or social reasons and NOT to avoid pregnancy.

Elizabeth Banks used a surrogate after embryos failed to implant in her womb

http://www.ivillage.com/celebs-who-used-surrogate/6-b-140197#491540

Overwhelmingly, all the women we speak to (and even the same sex couples!) say that if they had a choice, they would carry their own pregnancy and have their own child.

Carrying your own child is the ideal situation. Surrogacy is a last resort option, a decision that is costly even when it is 100% altruistic as it is in Australia. If there is any other way to safely have a child, the intended parents would gladly choose it.

For many of us, our bodies represent the ultimate in betrayal. We have battled cancer, heart disease, blood clots, or were born without a functional uterus. So to say we are protecting our body for beauty is ridiculous. As a group, we are littered with scars from operations which we have survived. We wear our scars with pride and would be more than happy to wear our pregnancy stretch marks with a greater sense of pride.

At Medicareless, we believe stretch marks are beautiful!

Unfortunately, some of us will never have the pleasure of knowing how it feels to carry our own children.

For those of us doing surrogacy, it simply isn’t possible to carry a child safely. So please think of us when you next hear this surrogacy myth.

If you think that Medicare laws in Australia should be equal for all, including those accessing surrogacy, please download and sign our petition for change and send it back before June 5.

“Why don’t you just adopt?” – Questions asked of surrogacy patients

So often on the path to surrogacy, well-meaning people ask “Why don’t you just adopt?” This question, while well intentioned, shows a certain naivety about the process of adoption including the incredible challenges, costs and complexity.

Medicareless interviewed Arielle, a mother from surrogacy, who first looked into adoption carefully before going down the surrogacy path. Here is her story.

BUBS!

Arielle’s beautiful sons from surrogacy in India

What medical reason do you have for needing to look into adoption or surrogacy?

We started to try to fall pregnant in 2005 and expected the ‘happy accident’ to occur naturally. The years passed and we realised something was wrong so we saw a fertility specialist who announced that we were ‘infertile’ simply because after a year of trying, at my age (32), we should have been pregnant already.

Did you try to fall pregnant yourself? What happened?

We started the IVF journey not longer after this bombshell was dropped on us. And then we tried and tried again for the next 6 years. We were never given a reason for it not working, I just simply couldn’t get past the 2 week mark after each transfer. And with every attempt came the devastating realisation that we were not successful and that with time ticking away things would only get harder. I suffered so much pain and grief during this time. So much soul-destroying confusion and despondence. People kept telling me to be positive and keep trying. And somehow, after each round of IVF and the grief that followed, I always got back on the horse and tried again. Physically, psychologically, spiritually – I was crushed. Adoption was always in the back of my mind as a road we’d go down when the time was right, but as you are not ‘allowed’ to be undergoing IVF when applying for adoption, I needed to wait until I was ready to stop trying to have my own baby. This is in itself was a huge step to take – to let go of falling pregnant, experiencing motherhood in the ‘normal’ way, and seeing a child grow up that came from within me and looked like me.

When did you first think of looking at adopting?

It certainly wasn’t when people – who knew our pain – would flippantly remark “Why don’t you JUST adopt”! This started happening in the first year of our IVF journey and it was simply insulting. Even after 6 years of IVF I wasn’t quite ready to look into adoption. I still had some hope of carrying our child and -not even realising just how hard it would be -adoption still felt like a very hard ‘other’ road to travel.

What was it that attracted you to adoption?

After all that we’d been through in the better part of the last decade, we decided that adoption would be a better option than putting ourselves through more tortuous rounds of IVF. I thought logically that if we followed the steps given to us to adopt, did the courses, reading, interviews etc we’d end up with a child or children within a few years and finally have the family we yearned for. We also felt that it would be a wonderful thing to bring a needy child or sibling group into a loving family. We had so much love to give and so many years of parenting that had been preparing for – we felt so ready to adopt after 7 years of failing to start a family the natural or IVF way.

Describe the adoption process.

We first had to wait for the introductory seminars to proceed. That was the first chapter of waiting. So we decided – ok let’s adopt! And then found out it was 4 months until the first seminar was to be held. We waited patiently. We attended the seminar with open eyes, ears and hearts and met many other hopeful ‘intending parents’. The coordinators were very empathetic but warned us that the adoption route could be extremely challenging and that only a small percentage of people would get to the finish line, mainly because of the time and commitment it took to go through the process. We did not yet have an inkling that the challenges would mostly be due to the small number of children that are placed in Australian families (from overseas). We were advised to choose overseas adoption as Australian children are mostly fostered into known families. And we were only able to select one country to adopt from. We were told that this country may change it’s relationship with Australia at any point and close the adoption program. So to keep reading up on current laws and changes in case it affected our chosen country’s program.

We then proceeded with the interview process. This went on for a year and cost over $10K. We would rush out from work to meet with the social worker who would investigate everything about us and our lives and intentions for the adopted child. We were told to be prepared to move house, learn a new language, attend picnics with other adoption families, travel to and from the child’s country of origin and blend aspects of their culture with ours. We had to be prepared to be open with the child about their origins when the time was right. We understood why they asked of us these commitments…and we were more than willing to compromise in every way we could if it meant we could have a child of our own.

We also had to learn about an excruciating check-list of ailments, ‘defects’ and historical matters (such as incest, addiction, abuse) to let the program managers know that we were prepared to live an adopted child that could have any number of debilitating illnesses, deformities or social impairments. We were told that the less boxes ticked the less chance we’d have of being matched with a child, so we ticked them all.

Around that time we also had to give up notions of adopting a baby. At our age (38 by then) our best chances lay in putting our names down for older children (4+) who were more likely to have had a background of abuse or neglect. So we ticked away, hoping for a small miracle,  and hoping that we’d be matched with a relatively healthy, and if possible, happy child. Unfortunately, we knew the chances of this were very slight. Still, we forged ahead, knowing that we would cope with no matter what or who came our way. We were by that point simply desperate to hold and love a child as our own.

So when did you start looking into surrogacy?
We were towards the end of the adoption interview process which had taken about a year and was already very costly both financially and in terms of time. Friends we’d met through the adoption seminars had already been to an Indian Surrogacy Clinic (that I’d also seen featured on the ABC’s Insight program earlier in the year, when surrogacy was still a strange concept that ‘other people’ did but certainly not us!) and within a couple of months after returning home – they had announced they were pregnant with their surrogate. I had been to India 12 year’s prior on a soul searching adventure and had a great affinity with the country and people. And although we were still a little freaked out by the concept of surrogacy, we began to normalise it via the hundreds of questions we asked of our friends plus some online forums and groups I joined. As the adoption interviews neared the end we found out that our country of choice had a wait list of about 1-2 years to GET ON the actual wait list for child placements (being only 10 or so placements per year from this country!) And THEN the long 3-6+ year would begin. Not only that, but we were advised to keep checking online for changes in the country’s adoption program as it could close or change at any time and that could impact us immediately. This could mean starting over with another country/program and certainly after a few years with our getting into our mid-40s we’d have to reapply anyway. So given these parameters, at the best of situations, we would be around 45 by the time we had waited the 6 or so years to adopt.

Adoption was, in a nutshell, a host of uncertainty and painstaking waiting whilst enduring daily pangs of childless grief, while we watched our friends come home with a baby via surrogacy. We began to think about hopping on a plane to India and giving surrogacy a go – our final throw of the dice (as it’s been called recently in a Radio National story!)

As we waited for our social worker to go to the loo during our final adoption interview – just before she announced that we were (in the eyes of DOCS) deemed ‘fit’ to be parents’ (!!) – we looked at one another and said “Are you thinking what I’m thinking?” – and with a nod and smile we both just said the hushed word INDIA. Within months we were there…the lead up to going was so hectic – juggling work, surrogacy research, finances (the surrogacy was only possible by digging deep into our mortgage savings), visa applications, checking out legal implications and always managing our heavy hearts. At this point and after so much failure we didn’t seriously think surrogacy would work for us. We just needed to tick the box in order to tell ourselves that we’d tried EVERYTHING to achieve our dream to start a family.

On the way to India we decided that this was really it – one trip, one try and then a new journey: hit 40 and create a new enriching life without children. How we’d do that was still a mystery to me, but I knew that I didn’t have any puff left in me after this final – and at the time strange and scary – attempt at starting our family.

How did surrogacy work out for you?

Potty!! 042

Finally, we have the family we’ve always dreamed of and feel especially lucky to have been blessed with twin boys Leo and Noah who are now 6.5 months and thriving. We feel proud of ourselves for having undertaken the surrogacy route especially with all the strangeness and fears that it presented to us. In the end, we realise that by taking matters into our own hands this way and taking a few risks fulfilled on our dream to have a family in a much shorter time than adoption would have. Much as we would have loved to embrace a child from another country with our love and create a family this way, the Australian programs just make it seem so out of reach and near impossible to succeed. Surrogacy didn’t give us any guarantees as an option but it did work for us. We’ll forever be grateful for our surrogate and everyone involved who helped us to make this happen.

What would you say to people that say “Just adopt” or “Why don’t you just adopt”

Do some reading! And don’t think that a grieving mother or father-in-waiting is prepared or even able to give up on having their own child so easily. I would say to those with children – imagine if someone took your children away. How would you feel? Would you ‘just adopt’? As this is what it felt like to me – that someone robbed us of having our own children. Adoption was always going to be an option, but the spiritual crisis presented by not being able to have your own child is never going to be repaired by the concept of adopting.

Surrogacy Myths: The career woman too busy for a family

Is surrogacy a choice? Do women choose to allow another woman to carry their babies because they are too busy to do it themselves?

All too often when we start conversations about surrogacy, certain repeated themes come into the conversation. One of those themes is the idea that surrogacy is a choice. That it is something women may choose to do because they have a solid career and are ‘too busy’ to take the time to gestate their baby. Or they are ‘too old’ because they have ‘spent their lives working on their career’. In other words, people question: ‘why should we support you when you have made bad choices and are now paying the consequences for those choices?’

We heard this myth of the busy career woman in the interview last week with Dr Andrew Pesce, former head of the Australian Medical Association. While we were happy that he supported our cause for equal treatment under the Medicare laws when accessing IVF for surrogacy, we were saddened to hear him bring the ‘mythical career woman’ into the media interview.

Let’s consider this notion for a moment. Just who would this mythical woman be, that would prefer another woman to have her own baby for her? Let’s look at the case of Nicole Kidman as a prime example. Not only is Nicole potentially quite rich, famous and a very busy career woman, but she also used a surrogate to have her daughter Faith Margaret after giving birth to her first child Sunday Rose.


<Image from JustJared.com >

On the surface, Nicole Kidman could be this mythical woman. She could be the busy career woman/ celebrity who is ‘too posh to push’. The obvious question then is: Why did she keep trying so hard to have her own baby?

Kidman spoke to Who magazine about her depression, and repeated pregnancy failures:

“I had tried and failed and failed and failed. Not to be too detailed, but I’ve had an ectopic pregnancy, miscarriages and I’ve had fertility treatments. I’ve done all the stuff you can possibly do to try get pregnant.

Every woman who has been through all those ups and downs knows the depression that comes with it. So the way it just happened with Sunday was like, “What?” The percentages were so low. It is the miracle in my life.”

So if you scratch the surface just a little, any journalist worth their salt can see that there is very likely to be some underlying issues regarding WHY Nicole Kidman choose a surrogate to carry her precious second child into the world. In her own words, Kidman says in an interview with People magazine back in 2007:

“There’s a complicated background to that, given that I never speak much about many things. One day maybe that story will be told.”

Yet many persist in saying she represents this myth of a career woman who isn’t interested in carrying her own baby. We here at Medicareless believe that this example shows that celebrities can have infertility issues too. That just like the rest of the world, being rich or famous does not exempt you from being the 1 person in 6 that will suffer from infertility. In all likelihood, there is a very sound and MEDICAL justification for Nicole and Keith’s decision to use a gestational surrogate to carry their child.

The mythical career woman in Australia

To continue with this analysis – with maternity leave, the expanding right to flexible working arrangements to help modern families with implementations such as working from home or job sharing – what woman would feel the need to use a surrogate to aid her career progression? In fact, Australia topped a list of 128 countries by international consulting and management firm Booz & Company for women’s access to education, equal pay, childcare and anti-discrimination policies. Should the career woman want a baby, she can have it.

And as unfortunate as the facts are – the glass ceiling is alive and well in Australia. So the likelihood that a woman is actually in an extreme position of power that requires her to not take time off to have a baby is extraordinarily low. This shows that if this mythical ‘I can’t afford time to have my own baby’ woman does exist, she is ridiculously rare.

In fact in the Sydney Morning Herald, October 17, 2012, Helen Conway, the director of the federal government’s Equal Opportunity for Women in the Workplace Agency, said:

”In Australia, women hold just 14 per cent of board seats in Australian companies, just five CEOs of our top 200 companies are women and a quarter of our top 200 companies have no women on their boards at all.”

Ms Conway said more than 50 per cent of university graduates in Australia were women, but that had not translated to substantial increases in the percentage of women in corporate leadership positions. ”We are wasting our female talent,” Ms Conway said.

So this collectively imagined mythical woman, at the top of her career and totally focused on her position as CEO or CFO, unfortunately, is an incredible rarity and is not one we should be focusing on when discussing the very real, and very immediate needs of surrogacy patients wanting a family.  This rare case of a woman who is willingly “choosing” surrogacy should not be used as a political vehicle of manipulation to implement rules that deny the majority of genuine patients from medicare benefits.

So if it isn’t career, what are the real issues that require a woman to seek a surrogate to carry a child? We took an informal review from our small community and have made a list of the medical issues that have forced them to seek a surrogate to have a family. Note not one of them lists ‘my thrilling career’ as the reason for surrogacy.

All of these women deserve a chance to do IVF and receive equal treatment under the Medicare law when trying to have a family.

  • Age 35 : Survived cancer twice. Now in remission and wants a family. No children.
  • Age 36 : Severe fibrosis followed by multiple failed IVF cycles. Dr. confirmed that the patient would be unable to fall pregnant when she was 35. No children.
  • Age 31: Emergency hysterectomy aged 26 as a result of eclampsia/organ failure/hemorrhage during childbirth. One child aged 4.
  • Age 34: Severe post-partum hemorrhage and uterine inversion resulting in emergency hysterectomy at 34. Still 34 now with one six month old baby.
  • Age 38: Rare blood clotting disorder that causes deep vein thrombosis when pregnant. 3 failed pregnancies, each resulting in massive clotting with risk of stroke, heart attack, death. Began trying for children at 29. Recently recommended for surrogacy after another failed pregnancy and blood clotting episode. No children.
  • Age 40:  Autoimmune disorder, antiphospholipid antibody syndrome. This caused the death of two of three boys (pregnancies). Now has a mechanical mitral valve after 2 open heart surgeries and is on warfarin which is counter-indicated for pregnancy. One child aged 4.
  • Age 34: Heart-double lung transplant recipient age 24 required due to developing pulmonary hypertension and right heart failure which resulted from a ventricle septal defect at birth. Risks of carrying a child include birth defects, very high risk of miscarriage, kidney failure, very pre-term delivery. No children.
  • Age 30: Cardiomyopathy (heart failure). Patient is healthy on drug therapy but cannot carry a child as she will have a heart attack or stroke and most certainly will die. Additionally the drugs are also not compatible with a developing baby. 21yrs old at age of diagnoses. Have been trying a number of options to have a baby for the past 4 years. No children.
  • Age 38. Heart transplant at age 26 due to a virus. No children but surrogate currently 9 weeks pregnant and all looking good for a birth due 26th November.
  • Age 35: Born without uterus. MRKH syndrome. Diagnosed at 17. No children.
  • Age 29: Hormone positive breast cancer at age of 26, had a mastectomy, did chemo, hercepton and radiotherapy. Cannot risk a pregnancy because of high chance of recurrence and on breast cancer medications that cause deformities when pregnant.
  • Age 35: Marfan Syndrome. Open heart surgery at 32 to replace aortic valve and entire ascending aorta. Life long warfarin therapy which is counter-indicated for pregnancy. Twin boys now aged 3 yrs born through surrogacy at age 35 on 4th and final attempt.
  • Age 27: Numerous clots. Clotting disorders- Antiphospholipid syndrome, prothrombin gene mutation g20210a and lupus. Age 16 when first diagnosed. No children.
  • Age 35: Emergency hysterectomy at 35 during childbirth. Have 10yo and 3yo sons. Did IVF for 6 years to have 2nd son (genetic condition means only 1 out of 8 eggs are viable). “Our daughter is in heaven”.
  • Age 30: Diagnosed with rare autoimmune disease (Takaysu’s Arteritis) at age 24. Waiting for open heart surgery and will be on medication that is counter-indicated for pregnancy. No children.
  • Age 32: MRKH Syndrome born without a uterus. Diagnosed at 17yrs. First gestational surrogacy attempt at 30yrs resulting in 1 child (now 22mths), lost her twin. Second attempt lost baby at 17wks.
  • Age 29: MRKH Syndrome diagnosed at 16 age. No children.
  • Age 42: MRKH Syndrome diagnosed at age 6. Not only not a full kidney but no uterus, no fallopian tubes, no cervix but thankfully has ovaries so did IVF last year & have 6 embryos ‘on ice’.
  • Age 27: Breast cancer, recurrence in lymph nodes when pregnant with son at 26 years old. The cancer was estrogen receptive, so doctors advised to not get pregnant again and that removal of the ovaries was a good idea to lower the estrogen to ensure no more recurrences. Full hysterectomy. One 8 month old child.

If you have been moved by this list, and feel that the Medicare laws that do not allow these women equal access to fertility rebates is unjust, please download and sign our petition before June 5. We welcome your support.

Alisa’s story – a cancer survivor who wants a family

In 2008, a week away from our 1st wedding anniversary I was thrown into a severe
round of chemo, radiation and brachytherapy. I was diagnosed with a very aggressive
and severe form of lung cancer that on very rare occasions attacks the cervix, which is what happened to me. I was given a 20% chance of survival regardless of my treatment, so it all looked pretty bleak.


<Image from: Journeying Beyond Cancer >

I managed to get through it with the help of family, friends and my wonderful
husband who made me laugh every day, I’m not sure how, but he did.

I don’t remember much of that time now, I did a lot of sleeping, crying and trying to
eat. I was determined not to lose too much weight as I’m quite slender to start with. I
guess you can say I was quite determined to stay alive. I still have everything intact,
but am unable to conceive or carry, which makes it very upsetting. For some reason
the choice to have my own family has been taken away from me. I am now 4 years in
remission. Right now we are looking very good. So I just want to get on with my life and that means following my dreams for a family.

Troy and I have wanted a family for years, even before we got married, but I wanted to be married first as I thought it was the right thing to do. We have nieces and nephews and so many friends with kids, and we just know that having a child will bring us so much joy.


So… after many years we are up to the surrogacy stage. Yes, it’s taken that long to get through the egg donation. We had a few offers from egg donations, but for one reason or another, they were not medically fit or time passed and we didn’t hear from them again and other ladies were helping someone else. And we’ve had a lot of stumbles too.

We eventually found a lovely lady and have 5 embryo’s freezing awaiting a surrogate.
The six month sterilization period will be up at the start of July, 2013.

We have been very fortunate to have had 3 surrogates offer, but for one reason or
another it hasn’t worked out. We are hopeful that someone out there will be able to
help.

At times we have been quite upset with the whole process to be honest and feel very lost and alone. It’s been extremely expensive so far, from taking intended egg donors and surrogates to the Dr’s – only to find that the lovely people who have offered are not “medically fit” to go ahead with, and the expense of traveling on many occasions. There’s no Medicare for any procedures so every time we start this process with someone new I am out of pocket again. And again. And Again. Still, we can’t let go of our dreams. We’ve come so far to get to this stage that we can’t just give up now.

We have also had a lot of trouble with the clinic we have been going to. Wanting
us to do things a certain way which doesn’t fit our situation, well to be frank, wouldn’t fit anyone’s situation. I won’t go into details. It’s caused a great deal of stress, but fortunately not on our relationship. The last couple of years have definitely brought us closer together.

We still have our eyes on the prize so to speak and know that we will eventually get
there. We are quite patient and know that an angel surrogate will help soon enough.

We have sooo much love to give it’s not funny. I think our cat is going slightly crazy from all the cuddles and attention it gets! Troy loves sports and I just know he can’t wait to have a child to go surfing or play football with, and I love baking and can’t wait to make special treats and birthday cakes for my much longed for child. We’ve got a big backyard planned for a pool and cubby house, and a lovely house we are slowly renovating and can’t wait for the day that we bring our newest member of the family home to share it with.

Our parents on the other hand are on another level!! They are already buying things! I’ve told them to slow down, but they are excited that we have the embryos and it’s only a matter of time and determination and we will find a surrogate.

Alisa

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If you would like to help Alisa as a surrogate, please get in contact with us via the Facebook page (linked at right). You can also support us by downloading the petition and collecting signatures – to help cancer survivors gain equal access to Medicare to have a family.

Dr Andrew Pesce: Medicareless petition will get the government to react

Dr Andrew Pesce, former head of the Australian Medical Association (AMA) and Jillian Spears, a surrogacy patient, were interviewed by 4BC radio in Brisbane on Monday, 15th April. In the interview, Dr. Pesce agreed that the Medicareless petition to change Medicare laws would get the government to react. The aim of the petition it to provide equal treatment under the law for all IVF patients, including surrogacy.

“The AMA’s position has always been where a procedure is lawful, and it is clinically necessary, the AMA believes that the whole principle of Medicare is to make sure that clinically necessary and lawful services are made available to people that need them. So this would certainly fall into that category,” he said.

The AMA represents the interests of more than 27,000 medical practitioners from all specialties and locations across Australia.

andrew-pesce

Listen the entire interview here

Partial transcript below:
Why no rebate?
“I think it’s just a historical fact, there’s probably been a slow evolution of what technology has been available for people and surrogacy only came into clinical use probably some time after the rebates were set. Governments tend to have a policy that until they make a specific decision that until they are refundable through Medicare then they aren’t. That’s why a lot of new treatments often are outside Medicare rebates. And leaves us in what is quite an anomolous situation.

Wouldn’t surrogacy give some women a better option than IVF?

There is no doubt that for some women their only option is surrogacy……Now I have to say I wasn’t available to listen to your discussion with Jillian so I have absolutely no background to her medical illness and story.

Well basically due to illness, her, and her other friends, well, she lost her womb.

Well obviously, she can’t carry a baby so there is no option for her other than there being a surrogate to carry the embryo on her behalf if she was able to donate eggs to be fertilized with her partner’s semen. So for her it is the only option.

For various other people, normally most couples would try very, very hard and exhaust all possibilities of carrying their own babies themselves, and only consider surrogacy if it seems to be the only option left available to them.

It seems really expensive doesn’t it. I mean, the average cost of a legal surrogacy is around $60,000.

In which country are you talking?

Obviously here in Australia.

So, I am not involved in the fertility industry. I guess this is in addition to the normal IVF costs, I guess it is because you need to pay for the time and pain and other things associated with the other things of having another person having a baby on your behalf. Look, I am not sure how those costs have evolved, but it certainly does sound expensive.

As the former AMA president, would you see with this petition, that there’s potential that the government may react at last and that the government may do something about this and provide some kind of rebate?

Oh, yes, I think so. The AMA’s position has always been where a procedure is lawful, and it is clinically necessary, the AMA believes that the whole principle of Medicare is to make sure that clinically necessary and lawful services are made available to people that need them. So this would certainly fall into that category.

There are some other times when surrogacy might be requested where there isn’t a medical necessity for it. Let’s just say for argument’s sake there was a woman who was too busy in her career to take the time off to become pregnant and wanted someone else to carry her baby. I think some people might say there are some examples where we could think that we don’t that taxpayer dollars are necessarily best invested. But I think that most people would agree when it’s the only option available for a couple that are desperate to have children, I think most people would be comfortable with Medicare covering it.

Our Ms. Amazing has found us :) We have a surrogate!!!!!

One of the members of our community has some good news to share! She has just found a woman willing to carry a baby for her. That part of the struggle over, now she will be facing the IVF clinics, counselors, lawyers and more. Support her by following her journey, and say congratulations while you are over at her blog!

thesiblingprojectblog

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Words simply cannot describe the emotions running through my bones at the moment. I have never been so in awe of someone in my entire life. To offer the gift of life for someone else, and cherish and take care of that life until when we can take over is nothing but miraculous.

A very spiritual man from India recently gave me some advice. It was a time where I wondered if I should give up. It was a time where I wasn’t entirely sure I had enough left in the tank to continue on with such an emotional and difficult journey. With every high came twenty lows and with it the wonder of whether I could continue on this path. His wise words encouraged me on and it is the reason I am now where I am today.

“Never let the flame of hope go out. With hope in…

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