Wanting and waiting

A law regulating assisted procreation is urgently needed and should ensure therapy is the foremost support provided to childless couples, according to Donia Scicluna.

“If there is therapy and proper coaxing towards the treatment couples choose, doctors will not have to face a bundle of nerves and anxiety. We need to deal with their anguish and exorcise the ghost called infertility that has entered couple’s lives,” she said.

Ms Scicluna, a life coach and facilitator of Cana Movement’s Wanting and Waiting support group, believes those involved should sit down around a table to ensure these couples’ rights and choices are being respected.

“I want a law to be introduced; one that respects these couples. Too many are afraid of speaking out because they’re not respected by society. They have to put up with so much and it seems the only mother being respected by society is the one who bears a child naturally.”

The law on assisted procreation has been in the pipeline for years, despite an extensive report drawn up by Parliament’s social affairs committee in 2005.

In 2009, a new parliamentary committee was set up tasked with discussing three issues – the eligibility of couples for treatment, the freezing of embryos, and sperm and egg donations.

Its recommendations were released last October and it is now up to the government to draw up a Bill to regulate assisted procreation. Earlier this year, Prime Minister Lawrence Gonzi had said this was one of the matters Cabinet had to discuss.

The debate was reignited two weeks ago when five sets of triplets – all premature and conceived through IVF – were born within the span of one month, stretching the facilities of the Neonatal Paediatric Intensive Care Unit.

Ms Scicluna, 48, who next year qualifies as a gestalt psychotherapist, speaks from experience and nine years of helping couples face the physical, emotional and spiritual struggles that come with infertility.

Ms Scicluna, who has been married for nearly 22 years, was instrumental in setting up WAW in 2001 after she herself encountered fertility problems.

She spent four years trying different procedures, including IVF, until she finally became pregnant. She gave birth to Patrick on June 30, 1993, but he died six weeks later from a virus.

“You’re expected to stand up on your feet and get on with life, but all you want to do is weep this loss and somebody to acknowledge your pain. What did I care that he was now an angel in heaven?” she recalled.

Her husband threw himself into his work and she tried to heal the invisible wounds by helping those facing the same ordeal within her parish.

“But then something happened. Once I saw that everybody within my family had managed to come to terms with it, I crumbled. I became a monster, constantly crying and seeking comfort in food. I just did the bare minimum in the house and spent hours hiding in bed.”

One day during that misery she heard Cana’s Fr Louis Camilleri on the radio speaking about his wish to start a support group for those without children. The next day she was on Cana’s doorstep volunteering to set up WAW.

The main aims of the group are to increase the awareness of infertility problems, offer solidarity, friendship, hope and encouragement to couples facing this trauma, bring together people who share common experiences and offer informal support and information through regular meetings and talks by professionals.

She believes couples have the right to choose the procedures they wish to undertake and as a therapist her goal is to support them on their journey, whatever path they choose.

“Unfortunately, at the moment counselling is the last resort because they are not aware of the help out there. Therapy should be the hand couples hold throughout their journey to conceive,” she said.

These couples should not be judged or made to feel guilty that they were doing something wrong by undergoing IVF in their quest to start a family.

“We need to be sensitive and empathise with these couples.”

Those who wish to make contact with Ms Scicluna can send an e-mail to donias@maltanet.net.

The expert view

Prof. Mark Brincat, Obstetrics and Gynaecology Department director, is one of two doctors in the country who handles IVF procedures. He fears the way the discussion about IVF is going in Malta threatens to make the procedure much more difficult and potentially more expensive, less successful and indeed more dangerous than it needs to be.

How many couples experience infertility problems in Malta?

It is estimated that at least 10 per cent of couples seek help for infertility and this number is rising because of socioeconomic reasons leading to women having children later.

Does infertility affect more women than men?

Problems that might not have been severe at an early age are magnified at a later age. So yes, problems with infertility become more frequent with women delaying the start of their family. The problem of infertility broadly speaking is 30 per cent a female factor, 30 per cent a male factor, and 40 per cent a factor affecting both.

What are options available for infertile couples?

There are various treatments for infertility. First, however, careful history taking and investigations are important. Then, a series of complicated treatments are available, from fertility tablets to stimulate ovulation, right up to IVF and intracytoplasmic sperm injection (ICSI – a medical technique used in assisted reproduction).

How many couples resort to IVF every year? What is the success rate?

Some 120 cycles of IVF are carried out in Malta every year. As much as half again of IVF pregnancies would have been treated abroad and come already pregnant. There was an unusual run of five sets of triplets delivering at 30 weeks of gestation all together. This has never happened in the 20 years since IVF was introduced in Malta.

This was obviously unusual and reflects a particularly successful run of IVF carried out at that period.

These five sets of triplets that you mention were born prematurely through IVF. Are couples being made aware of the risks beforehand? Are they being given a choice as to how many eggs they should fertilise?

All couples are counselled more than once. The risks of the procedure and the number of embryos transferred are repeatedly discussed till the end.

It is, however, very rare for every embryo that is transferred to implant. Most embryos, in fact, do not implant, which is also what happens in nature.

Do you fear that the way the discussion is going there is a risk that we could be moving towards a law that limits the choices science provides?

The discussions about IVF in Malta have always threatened to make the procedure much more difficult and potentially more expensive, less successful and indeed more dangerous than it needs to be. We can have a moderate programme, but in my opinion no serious programme these days excludes a degree of embryo freezing.

Is embryo freezing the answer?

Freezing is actually a policy in favour of successful childbearing and in favour of life. I envisage that the whole range of freezing should be available – freezing of oocytes (eggs), freezing of sperm and freezing of embryos. In fact, I feel we should also have a national facility for freezing stem cells from umbilical cord blood from every single baby born.

What is the way forward?

A state-subsidised programme for IVF is long overdue. A national continuous programme with adequate resources is also very necessary. Most European countries offer three cycles for free on the national health service, relieving a lot of pressure on IVF cycles. We need enlightened legislation, which mitigates the suffering of couples and helps them in a way that is acceptable to the average European country.