New technologies offer couples struggling with infertility more options than ever to conceive. But those would-be parents still face enormous obstacles of cost, time and emotional trauma. A non-profit group called Fertility NZ dedicated the week from September 23-29 September to those facing infertility. Called "The Missing Kiwis", this year's
'Emotional Russian roulette': The painful ordeal of IVF
Belinda, left, and Shane Cunliffe, right, with children Archie, 3, and Poppy, 5. Photo / George Novak
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"She said we would've conceived naturally by now, and let's pop you on the waiting list and see what happens."
The waiting list for publicly-funded infertility treatments in New Zealand includes benchmarks such as trying to conceive for at least 12 months. If there's no diagnosed reason for infertility, the couple must have been trying to conceive for four years, according to guidelines from Fertility NZ.
The Ministry of Health has set a threshold score for funding at 65 out of 100. The fertility score combines points from criteria based on a woman's chance of pregnancy such as age, smoking status and previous children. The woman must be aged 39 or younger and have a body mass index of 32 or less. Both partners must be New Zealand residents.
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Belinda says she was told the cause of infertility for her and her husband was unknown, and they could face a wait of five years to start in-vitro fertilisation (IVF) treatments due to lack of diagnosis.
During IVF, an egg is fertilised by a sperm outside the body. Belinda feels lucky her treatments were publicly-funded and she started IVF in 2011. The first step was intra-uterine insemination, or IUI, where specially-washed semen are transferred directly into the uterus via a thin catheter. When that didn't work, it was on to fertility drugs, egg collection, fertilisation and implantation. She says she got four good eggs.
"I tried doing it with timing, without drugs to help, but it didn't take."
The Pāpāmoa mum is grateful her husband was able to give her hormone injections (to increase egg production) and walk with her throughout the process. The couple travelled to Hamilton for tests and scans. Belinda was teaching fulltime, and would ring work to explain she'd need to be away for treatments.
"I know not everyone is happy to share that kind of information. But being around a lot of women made it easier."
While Belinda says egg collection was physically excruciating, the emotional pain of infertility cut just as deep.
"There's so much stress and anxiety with, 'Is it gonna work?"."
After living in London, where she met Shane in her 20s and consciously avoided pregnancy, she says infertility birthed self-doubt. Did they wait too long to start a family? What effect did birth control pills have on her body? Five years of trying and treatments, she says, were isolating.
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"I had a friendship break down because she fell pregnant and I wasn't and she didn't understand what I was going through."
For the second IVF implantation attempt, Belinda says the doctor used drugs to create the right level of hormones in hopes she'd sustain a pregnancy. She gave birth to daughter Poppy in 2013 at age 36. The process was repeated from the same batch of eggs and son Archie was born in 2015.
"We had a really easy run with it. We had no miscarriages. It didn't work the first time, but that was very straight up."
For a long time, Belinda says sadness and pain surrounding pregnancy felt ingrained.
"Even though we had our kids, that emotion was the first thing that came up and it took years for me to actually be happy when I heard someone was having a baby."
Shane too says he now realises the difficulty of their ordeal.
"I think you can't see the wood through the trees when you're involved in it. It's only when you look back on it can you see how horrendous it was," he says.
He likens the infertility treatment cycle to playing "emotional Russian roulette".
"If you can imagine losing a loved one every month even though our loved one didn't exist, that compounded in terms of it ate up any optimism and confidence of what we were trying to do. Each month put another layer of division between you and the world."
The Cunliffes scheduled their lives around shots, scans and tests. Meanwhile, friends and family were producing babies with apparent ease.
"I remember vividly going to a nephew's second birthday - we had been trying for three or four years," Shane says.
"There was a house full of young kids, young families and we were the only ones there without kids. I was worried about Belinda because I was feeling out of my comfort zone ... and she would've been heightened times 100 compared to what I was going through."
Shane, principal at Te Puke Primary School, says the couple briefly pursued adoption at the same time as IVF. They attended workshops in Rotorua but he says they felt their chances weren't good. Prospective parents were asked to compile portfolios or CVs for biological parents.
"I came home and over two or three weeks did mine and she hadn't started hers. It was at that point I realised she couldn't do it."
Today, their family's complete. Belinda says, "In terms of conceiving we were really lucky. So many of my friends have had it [IVF] ... but they all have quite different stories."
Trial and tragedy
"I'm always going to regret not having a baby, but there's nothing I can do about it." -Kristen, Bay of Plenty
Kristen* says she should have a 4-year-old by now. Instead, the Bay of Plenty woman is childless after years of battling infertility.
She asked we not use her real name because the issue is still painful to talk about. When she married her husband, Russell* (also a pseudonym) at age 40, he already had children from a prior marriage.
He'd also had a vasectomy. Kristen says the couple spent six or seven thousand dollars for a reversal.
"The doctors said there was an 80 per cent chance of success. They were talking a load of rubbish."
Six months later, they learned the reversal hadn't worked, and were told chances of pregnancy success were 20 per cent.
They visited Fertility Associates, the only fertility clinic which holds weekly Tauranga appointments (though most procedures are still done in Hamilton). Because of Kristen's age, she wasn't eligible for public funding. She says she and Russell spent $15,000 on IVF which resulted in retrieval of one good egg.
"I think it should be [government] subsidised and not be given for free. The cost could be $5000 and not $15,000. People who struggle with infertility might give it more goes because it's a lot of money if it doesn't work."
One egg was implanted, and the couple went on an island holiday. What was meant to be a relaxing escape turned to sadness when Kristen miscarried the embryo. She texted her boss before returning to work.
"The whole thing is emotional. Those needles are horrible and he [Russell] had to do it to me for a whole month. The bruising and the hormones ... It's quite an emotional time, especially when it goes wrong. A lot of people don't even know. A lot of people think I just don't want kids."
Kristen says she's switched off to having children and feels no emotional connection with her stepchildren.
"I had to talk to my friend who didn't want babies because she could tell me about the pros of not having babies. You reach a point where you have to face facts where it's just not gonna happen. It's unfortunate Russell and I met at the wrong time ... We're at the stage where the other kids [his] are flying the coop ... almost at that freedom stage. It's one thing I have to look at as a positive."
Russell also remembers the time of infertility treatments as emotional and secretive.
"You're not telling everybody what's going on because you don't want to tell anything until you have good news."
He did, however, talk to workmates.
"You know that's gonna be confidential as well."
"Kristen was really set on being able to have a baby. It's really sad it hasn't worked out. I believe we did try. Maybe it just wasn't meant to be ... the odds weren't really in our favour per centage-wise, anyways."
Treatment advances
"IVF has become a lot more simplified, more patient friendly." - Dr Ved Prakash (VP) Singh, medical director, Fertility Associates Hamilton
Dr VP Singh runs Tauranga's only fertility clinic, a satellite of Hamilton's Fertility Associates, which is a national practice. Fertility Associates provides a regional service for Waikato, Bay of Plenty, Lakes and Taranaki District Health Boards.
According to Singh, the Hamilton clinic does about 500 IVF cycles per year, 100 to 120 of which are for people from the Tauranga area. The clinic sees more than 50 people each year from Rotorua. Success rates, he says, vary according to age.
"Because egg quality is a key. Under age 36 we expect around a 45 per cent chance of taking home a baby."
From ages 36 to 45 success rates decline steeply. He says at age 40, chances of having a baby through IVF are about 20 per cent.
"Once you're beyond 42, 43, we talk about the donor egg option. I think 10 per cent of treatment would be donor eggs."
Singh says New Zealand lacks donor eggs, partly because the law forbids compensating donors beyond expenses. He says people can travel to places like the California, where getting donor eggs costs around US$50,000.
"We need to do something to improve the donor group in New Zealand."
Singh says causes for infertility can be found in about 90 per cent of cases, but often, full investigations aren't done, because treatment overtakes diagnosis.
"Government funding requires a duration and a cause. If there's no cause, you have to wait five years."
He says about half his patients are government-funded; the other half pay privately.
Experts, including Singh, say IVF has become a lot more simplified in recent years. What used to be a four- to six-week course of injections has reduced to 10 to 11 days.
"We have better freezing technology and a reduced rate of hyperstimulation in the ovary."
Hyperstimulation can lead to swollen, painful ovaries and more severe health problems. Singh says the clinic can screen embryos for genetic abnormalities and monitors them with time-lapse video. He cites the cost of a fresh embryo transplant at his clinic at $14,000 and offers a three-cycle package.
"If they don't get a baby, they get a refund of 70 per cent of the fee. It depends on the age of the patient and is a sliding scale. They pay $28,000 -$30,000 upfront. If there's no baby in three attempts, they get a refund."
Singh says it's important not to underestimate the psychological impact of infertility and treatment. Two counselling sessions are included in the clinics' IVF packages.
"The best thing I tell patients is think of a wider time horizon, not one month, but a six- to eight-month period. Go with the flow rather than thinking two months in advance."
Patient numbers on the waiting list are not readily available by individual district health boards. A regional funding manager working for the Waikato DHB says the information is not required to be reported by Fertility Associates. Waikato District Health Board funding and relationship manager child, youth and maternity Adam Wardle says waiting times are about 14 to 15 months for the first IVF treatment.
"This has not changed significantly over recent years."
Wardle says the cost of privately-funded IVF is typically $11,000-12,000.
Starting line
"Think of all the **** women go through. It feels unfair sometimes." - Kat Raka, Mount Maunganui
Kat Raka says she's known since age 15 she wanted to have children. She married husband Glenn Raka last year and says they've been trying to conceive for about three years.
She has endometriosis, a condition where endometrial tissue grows outside the uterus. She consulted a specialist in January for surgery to have the extra tissue removed.
"He didn't beat around the bush. He said if it [pregnancy] hadn't happened after three years, it's not likely to happen. My world fell through the pit in my stomach."
Kat will be 27 next month. Her husband is also 27. She says she had a painful procedure to see if her fallopian tubes were blocked (only partially) and her husband's sperm is fine.
Next steps to secure public IVF funding are surgery for endometriosis, and weight loss. Kat's been told she must lose 6kg to get her BMI to acceptable levels. She says the process feels "incredibly sexist".
She's enduring invasive procedures, working to lose weight and eliminating coffee and alcohol from her diet. She says her husband can simply cut back on those items.
"He had to give a [sperm] sample, and he was like, 'It was so awkward', I'm like, 'you got to do it in a cup, yeah, that sucks, but think about all the **** I have to do'. It's quite unfair sometimes."
After the fallopian tube procedure, Kat says she was on the couch, writhing in pain.
"None of his procedures have been painful. He's done a blood test and gave a sample in a cup twice."
Kat has so far lost 3kg and anticipates getting on to the public waiting list, which she's told is about 18 months long. But she's disappointed she'll become a mother later than she wanted if IVF succeeds.
"By the time we get to hopefully hold a child in our arms, we're going to be 30."
While she knows that's not old, Kat says women in her family tend to start having children about a decade sooner, and she had envisioned a big family.
"I always said my magic number would be five. He [the doctor] said unfortunately, that's probably not going to be realistic. They used to implant multiple viable embryos for a better chance one would stick, but in New Zealand they don't do that anymore. They only put one embryo in."
Women in New Zealand having IVF used to have a high chance of having twins or triplets because up to three embryos were transferred in each treatment cycle. But multiple pregnancies carried significant risks of premature birth and health problems for babies.
That's why it's now standard practice to transfer a single embryo in each IVF cycle. Any excess embryos remaining after the transfer, are kept in the laboratory until they can be assessed for freezing, according to information from NZ fertility clinic websites.
Kat says sometimes she can cope with seeing babies "and other times I'll see a baby and I'll nearly be on my knees crying". She says her stepmother described wanting a child as a physical ache.
"It's a tug at the chest ... it's even starting to become difficult to spend time with my godchildren because they're both toddlers. They climb up me or sit in my lap and half the time I'm quietly crying."
Kat says her biggest worry beyond IVF failing is the stress infertility places on her relationship.
"I would like to think we could do it. We've been through other bad stuff together. But something like this is very different. No one seems to think about the potential marriage bomb it could be. You have to do counselling to see where you're at, be in the right state of mind, be pumped full of hormones, have eggs extracted ... it can mess with your head. It's not as simple as going to the doctor and saying, 'Hey, we can't have a baby, how about we try IVF?'.
"What I want more than anything in the entire world is a child, is to be a mum."
Advice from the other side of IVF
Belinda Cunliffe says those struggling with infertility should get checked out sooner rather than later.
"If you're trying and it hasn't happened even within six months, get to a GP."
Her husband Shane says: "Talk to people. You'd be surprised who has gone through it these days. Make sure you've got a real support network. The mental side eats you up. I think there's only so much you can take of going down the IVF journey."
Funding:
Requirements for publicly funded treatment differ slightly by District Health Board, but criteria include:
The couple have been trying to conceive for at least 12 months.
If there is no diagnosed reason for infertility ("unexplained infertility"), the couple must have been trying to conceive for four years.
Woman's age 39 or less at time of consultation.
Woman's BMI 32 or less.
Woman must be a non-smoker (at least three months prior to application).
NZ citizenship, residency or visa of at least two years' in duration (for both partners).
Access to publicly funded treatment for single men and gay couples and for transgender people has not been specifically defined to the same level but follows the same principles as for others.
Source: https://www.fertilitynz.org.nz/
Treatments for infertility:
Common treatments include medications to improve egg production, surgery on fallopian tubes, insemination of the woman with partner sperm or donor sperm, in vitro fertilisation (IVF) or IVF with intra cytoplasmic sperm injection (ICSI).
Though success rates vary, treatment does not carry any guarantee of success.
There is no treatment for egg quality (due to age) – egg donation is sometimes the only option for women with poor ovarian reserve.
Some people try natural treatments such as acupuncture and naturopathic treatments.
Some couples choose not to seek treatment.
A small number of New Zealanders will adopt children (around 60 non-relative adoptions per year), while others will remain without children.
Adapted from: https://www.fertilitynz.org.nz/
