Baby bonus: the hope and hurdles

By: ELISSA LAWRENCE    


Sperm donors are helping provide the gift of life for many South Australian families. But with that comes obstacles, as ELISSA LAWRENCE reports IT'S a select group. Recruits are tested, interviewed and analysed before they are accepted. Members are few but dozens of South Australian babies born each year owe their lives to these men.
Fertility clinic Repromed, which claims responsibility for the majority of births from sperm donations in South Australia , currently has 10 donors.
They will each father children for up to 10 families.
Limits are placed on each to limit the risk of half-brothers and sisters meeting unwittingly in later life.
Repromed has operated a sperm-donor program since its inception in 1987. Last year, 26 babies were conceived. In 2007, there were 42.
Flinders Reproductive Medicine also offers a donation program and has six donors on its books but says there were ``only a few'' babies born from donors last year.
Once known as anonymous sperm donors , a new generation of Repromed's ``clinic-recruited donors'' now must be willing to be contacted in the future by any offspring, once they turn 16 years.
Although not yet legislation, donors who are identified to a child, if they so wish, is the ``way of the future'', according to Repromed's donor program head, Dr Jane Elliott.
``Under law, at the moment children conceived by donor sperm are not able to access the donor's name, but we really feel that is coming,'' she said.
``We've thought a little bit ahead of the law in that one and, for the past few years, we have only taken donors who are willing to be identified when the child is 16 if the child wants and, indeed, only if the child knows.
``If both parties are agreeable, it is possible the donor and the child could meet but it's very early days.
``It's going to be another 14 or 15 years before we see some of the outcomes of these new rules.''
Repromed's business development director Dr Adrianne Pope said this week's proposed budget cuts to Medicare funding of IVF treatments would be ``devastating'' to many couples, including those accessing the donor sperm program.
``It will impact significantly on our patients and, for many, it will end their opportunities for treatment,'' she said.
``The rebate exists for all reproductive technologies. Many people have already told us they won't be able to afford care if that happens.''
Australian donors cannot be paid. In this respect, the system is vastly different to the US where donors are paid and recipients have large numbers of donors from which to choose.
Repromed offers recipients possibly two donors and information such as height, weight, eye colour, hair colour, education, jobs and a comprehensive three-generation medical and genetic history.
``You can't do what you can do in America ,'' Dr Elliott said.
``You can't say I want a university-educated, blue-eyed professional. We don't have enough people to be able to do that and we don't have enough multicultural people to offer to match every race.
``There is a shortage of donors. We have a little bit of variation but we're interested in getting more donors and certainly donors of different races.'' Typically, recipients will wait six months to a year for a donor to become available.
They are, ideally, aged between 21 and 45, although privately-recruited donors over 45 may be used with appropriate consultation.
Prospective donors must go through an intensive six-month testing process before being accepted.
This includes a lifestyle questionnaire, a full blood examination, a sperm quality test, screening of infectious and genetic diseases such as HIV, syphilis, Hepatitis B and C, and testing for cystic fibrosis. Donors are required to attend at least two hour-long counselling sessions and an interview process to determine if donation is appropriate.
They also must sign a statutory declaration stating they have not donated sperm at any other clinic.
Sperm is then frozen and quarantined for at least three months before it is screened again for disease and can finally be cleared for use.
If accepted, a donor will typically make a donation once a week - ideally about 10 times. While they are not paid, they do receive a travel allowance.
Each donation can make a number of ``straws'' of frozen semen. In the -196C liquid nitrogen storage tanks at Repromed, there are ``a few thousand'' of these straws awaiting use.
Semen can be kept indefinitely and there is no legal limit for how long it is stored.
Repromed has had a case where sperm was still viable after 21 years.
Donors are also given the option of specifying whether they are willing for their sperm to be used by same-sex couples, by single mothers, or have any other objections on the basis of religion or race.
They can limit the number of families their sperm is provided to and specify whether they wish to be notified when a baby is conceived and/or when a baby is born.
They also sign legal documents waiving any legal or financial responsibility to the child.
EACH donor is typically used to father children for up to 10 families. Each of those families has a ``definite right to create siblings for any child created'' and with no limit on the number of siblings per family, numbers of children conceived can vary.
``We don't take people who have donated anywhere else,'' Dr Elliott said. ``This is to limit the numbers so any children created have a much reduced chance of meeting someone who is genetically similar to them and even possibly being attracted to that person.
``It's a question of limiting the number of people who share the same genetics.''
But a group called the Donor Conception Support Group calls for a step further. Run by volunteers with donor experiences of their own, it wants a national donor register to which all donors and offspring subscribe. The group's national consumer advocate, Caroline Lorbach, 52, has sons aged 19 and 16 and a 13-year-old daughter all conceived from different sperm donors .
Her eldest son has 18 half-siblings that they know of.
``Most clinics will ask if a donor has donated interstate or at another clinic but it's up to the donor to tell the truth. There's no national register so there is no way of checking it,'' she said.
Ms Lorbach said her group recommended a maximum of five families that used the same donor, including the donor's own.
Any more than that and Ms Lorbach said the risk was unacceptable that half-siblings could cross paths.
``Often the children created are going to live in a similar geographical area so it increases the chance of getting together. For the children, also, the possibility of that is worrying. It's a psychological stress.
``A national register would also allow children the possibility to find out more about their half-siblings.
``One thing all my children are adamant about is that they should have the right to know who their donor is.''
Michelle Cefai conceived her two sons using the same sperm donor .
``At the time, my husband and I didn't know we couldn't conceive until we started trying, which we did for about three years,'' Ms Cefai, 46, of Sydney , said.
The couple turned to donation and their two sons, Todd, now 15, and Alex, 12, have always known of the circumstances of their conception.
``The only issues we are struggling with now is that we don't have access to information,'' she said.
``The boys have been quite comfortable with it and have brought it up in relevant situations. They are happy to put the donor in as a branch of their family tree.''
Ms Cefai said they had been provided with limited physical characteristics of the donor - he was listed as being of Australian heritage, of average height, with dark hair and olive skin type. His occupation at the time was engineering and his hobbies were surfing and travelling.
He was 33 at the time but no date of birth was recorded.
The clinic has tried to contact the donor, who has a common surname, but have been unsuccessful.
``Back then, anonymity was automatically guaranteed,'' Ms Cefai said. ``The Royal Women's Hospital in Sydney now has a voluntary register. We are on it but we need to wait until the donor puts his name down. Only if he does that can we go from there.
``Unfortunately, until then, we've hit a brick wall. It's extremely frustrating.''
DR Elliott said it took a special type of person to be a donor.
``They have got to be altruistic men because they are not paid,'' she said.
``They are sometimes men who have had their own children, who may have even experienced their own infertility treatment within their family and recognise the enormous gift that it is.
``I'm often impressed by the calibre of the people that do volunteer.
``These men are fantastic that they are willing to do this. You've really got to feel for people who decide it's time to have a baby and then find they have a fertility issue. Your heart goes out to them.
``A lot of heart searching goes into this decision. It is very much a gift of life.''

Dad's happy to see this father and child reunion

The eyes have it: Brian Wollaston (right) with his biological child Daisy Gleeson and her father, Paul Gleeson.
Photo: Craig Abraham

By Carol Nader
February 17, 2007

A potentially fraught search for a biological father has had the happiest of endings.

THEY could have passed each other in the street many times over many years, two strangers oblivious to their biological connection.

Daisy Gleeson had wondered all her life who her biological father was. As it turns out, he was living in the next suburb.

The Age first told Daisy's story in June 2005. She was 17 and had grown up with the knowledge that a sperm donor helped conceive her. But she was curious: who was he? Since then, Daisy has had some closure. She has found him.

Daisy's parents, Paul and Andrea, had explained to her from the start that they needed another man's help to have her. Daisy, an intelligent child, easily digested the information. But at about the age of six, she burst into tears one day and blurted out: "Daddy's not my daddy!"

Mrs Gleeson explained that that wasn't true. Your daddy is the man who is raising you. That put the matter to rest, temporarily. By the time she entered her teens, her curiosity was piqued and with it came impatience. "Can't you ring the hospital now?" Daisy would say from her Warrandyte home. The long wait until her 18th birthday stretched out before her.

In the neighbouring suburb of Eltham, Brian Wollaston, the man she urgently wanted to meet, went about his own life, unaware of all the fuss.

Had his surname been Smith, Daisy may have been left to wonder forever. But in the end, it was his unusual surname that helped Daisy find him. That, and the impeccable record-keeping of the Royal Women's Hospital, which tracked him down.

Daisy, now 19, remembers the day she got the call. "I think I've found him," the counsellor said. Suddenly, he had become a real person. "It messed with my mind," she says. "It was all-consuming." Long before she started searching, counsellors were preparing her for the worst. The fear of rejection was in the back of her mind. Would he refuse to meet her?

Mr Wollaston got the letter from the hospital telling him someone was looking for him. He called the hospital. Daisy had prepared a list of questions that she wanted answered. What was his favourite football team? What food did he like? What was his favourite Italian motorbike? And was there a history of medical problems in his family?

The counsellor made several phone calls to Mr Wollaston, each time asking for something extra. He had been a sperm donor at a time when the law allowed him to remain anonymous. Would he be willing to let Daisy know his name?

And five phone calls later, the most tricky question - would he meet her?

"I was always going to," Mr Wollaston said this week during a gathering with Daisy and her parents at the Fairfield Boathouse. "I made the donation in a certain spirit, and I wasn't going to cut her off at the knees."

The relationship started tentatively. First, there were nervous emails. Then they swapped photos. At last, Daisy knew what he looked like.

Then came the first meeting. They decided on an Eltham cafe - neutral territory. Daisy had pictured him in her head a million times, even before she had seen the photos. She watched him crossing the street until he was standing in front of her. Then she gave him a big hug. They have since become, in Daisy's words, "unique friends".

Mr Wollaston decided to become a sperm donor when he had just had his own child and thought, wouldn't it be wonderful to help others? So he went to the clinic. It's not a romantic ritual and he "went through every well-thumbed magazine in the place". The result is 14 children conceived with his sperm, in addition to his own three children. His wife worries that one of their children might bring home a girlfriend or boyfriend that is related, a tiny possibility but still possible. "The ramifications of that are severe," he says.

Daisy is lucky she found him. Many young adults will never be able to trace their roots. For those wanting to find out their origins, they can apply to the Infertility Treatment Authority, which keeps registers for donors, children and their parents.

For Mr Gleeson, who had five children from a previous marriage, infertility was never a problem. He had had a vasectomy and when he and his wife decided they wanted a child, he considered reversing it. But the medical advice was that it probably would not have worked.

Mrs Gleeson says: "I've been just as curious as Daisy is, and I was hoping for a good ending to the story. And it seems to be a good ending."

Updated Fri. May. 19 2006 10:31 PM ET
CTV.ca News Staff

A sperm donor passed on a rare and sometimes deadly disease to five children born to four different couples, Michigan doctors said in a report released Friday.

The children were diagnosed with severe congenital neutropenia. Patients lack a type of white blood cell that fights bacteria, making them extremely prone to infections after birth. The disorder also increases the risk of leukemia.

But congenital neutropenia only affects one in five million births."I would have thought it would never have happened, with the rareness of this disease or the chance of mutations in this gene," Dr. David Dale told CTV News.

Dale was one of the authors of the report, published in Philadelphia's Journal of Pediatrics.
There are about 500 sperm banks in the United States. Guidelines set by the American Society of Reproductive Medicine call for anonymous sperm donors to provide family medical histories dating back three generations.

But while all donors are checked for diseases like cystic fibrosis and sickle cell anemia, they are not tested for rare genetic disorders like congenital neutropenia.

If a person is a carrier of the disease but has no symptoms, it makes it even harder to detect. The report's authors said it's possible the Michigan donor had no idea he had congenital neutropenia.
Dr. Lawrence Boxer, lead author of the report, did not identify the Michigan sperm bank or the donor.
"The bottom line is, when you use a sperm donor you really don't know what you're getting," he told The Associated Press.

The report's authors traced the five children back to the donor by noticing they all shared the same version of the defective gene, while the four couples of the children all used the same sperm bank.
Canadian sperm banks are regulated by Health Canada. But Dr. Alfonso Delvalle, of Toronto's ReproMed Limited Sperm Bank, said it's almost impossible to adequately screen for rare diseases, "unless there was a clear-cut medical history that would have linked conditions."

Meanwhile, the five children are receiving daily drug injections to help increase their white blood cell count, and boost their resistance to infections.

They have a 50 per cent chance of passing the disease on to their own children, Boxer told AP.

With files by CTV's Joy Malbon in Washington and The Associated Press

Their quest constantly ran up against a wall of secrecy that has surrounded sperm donation for decades. But gradually, they discovered clues: his education, his field of work, even a description of his teeth...

Then, from a woman who helped the twins’ search, a name and a face: "It was like I’d landed a bomb in their lap," says this supporter. Still they couldn’t be sure. Finally, DNA tests swept away all doubts. Anne and Helen were left stunned by the discovery of who their genetic father really was.

Four Corners reveals the story of the twins’ tenacious journey in search of their genetic father, and its extraordinary conclusion.

Their story calls into question the confidentiality that still "protects" many sperm donors from being found years later by their offspring. It also highlights the failure of most states to regulate or even to monitor the donor conception industry. Helen and Anne know they were lucky to discover their genetic father’s identity. Now they wonder if he made other sperm donations and sired other children – half brothers and sisters to Helen and Anne. It’s not such a far-fetched idea.

Four Corners speaks to one man (not the twins’ father) who has donated sperm 318 times, including 270 times at one prestigious clinic. Because there are no registers of donor-conceived children outside Victoria, it’s anyone’s guess how many children he has created, who they are, or even whether some of them have met.

For many Australians – donor-conceived children and people needing help to start a family - sperm donation has been the gift of life. But for many donor-conceived children, that’s not quite enough; they also need to know the gift-giver.

Now governments are under pressure from donor-conception activists to strip away the secrecy and set up a central register – accessible only to children and parents - based on Victoria’s model.

The industry slams a register as a huge invasion of privacy and argues for continued self-regulation. "We don’t live in a police state," says the head of the industry accreditation body.

Where should government regulation start and stop in the emotion-charged field of donor conception? Can a balance be struck between the rights of children and donor fathers?

"Secrets of the Fathers", a compelling report by Janine Cohen, on Four Corners, 8.30 pm Monday 24 October, ABC TV.

This program will be repeated about 11 pm Wednesday 26 October; also on the ABC2 digital channel at 7 pm and 9.15 pm Wednesday.

Please use the links below if you would like to write to get leglisation in your state:

Theory of relativity
September 1, 2005 by Alex Wilde

Anonymous sperm donation raises a host of tricky questions, writes Alex Wilde.

Geraldine Hewitt would love to know why she has an aptitude for languages or where her asthma comes from. Since learning from her parents when she was five that she was conceived via an anonymous sperm donation, Hewitt, from Bankstown, has asked herself that fundamental question "who am I?" more than most. In addition, her maternal biological family tree stops with her mother who was adopted, so 22-year-old Hewitt has had to grapple with genetic blanks on both sides.

"I hate the fact that dad and I are not related. I compare our feet and say, look yours are really ugly like mine and he has to say there is no chance we are related, let go of that hope," says Hewitt, whose younger brother and sister were also conceived via sperm donation.

By 17, Geraldine had a lot of unanswered questions about her donor. "In reply to my inquiries to the Royal Hospital for Women, where I was conceived, I received a letter saying I was 'one of four live births'. I felt like a clinical statistic. They told me I have one half brother and two half sisters somewhere, all conceived and born in 1983. "My donor is apparently blond, blue eyed, 5 feet 8 inches [173 centimetres], fair skin, average build, Caucasian and O+ blood type," she says. "I knew some other girls who were conceived at RHW and we compared our little descriptors and they were all the same. You couldn't get a more bland description if you tried."

Donors participating in early artificial insemination by donor programs in the '70s and '80s were routinely screened for infectious diseases and given a medical history, but the information was generally sketchy.

Today, screening is carried out for genetic disorders common in certain populations, such as cystic fibrosis in Caucasian donors, Tay-Sachs disease in Jewish donors and sickle-cell anaemia in those with an African background. Tests are available in Australia for about 300 genetic disorders, but it is not feasible to blanket-screen prospective donors. However, it should be noted that couples who have their own biological children do not generally blanket screen each other, either.

"As with all of us there is a risk of heritable diseases, but donor-conceived adults have the fear of the unknown," says Hewitt. "Even where some families' records have been destroyed during the war, people growing up with their biological relations have the oral history of their extended family.

"One effect of not knowing my family medical history is that I am paranoid about my health. I put my hand up for any available health checks, because I don't have prior knowledge that would enable me to take preventative health measures. "Donor-conceived adults will have needs in the future. Even if this is not imperative at 18, it will be when we have our first child or if we have a medical problem. "Family medical histories of donors need to be updated regularly and held by a central body. I don't think anybody else should be created until the laws are brought up to speed."

Donor Conception Support Group, 9793 9335, http://www.dcsg.org.au

THE RIGHT TO KNOW

Last year the National Health and Medical Research Council issued guidelines recommending that clinics only use donors who consent to being identified to donor offspring, and that identifying information be made available to any child once they turn 18. Victoria is the only state with legislation that makes this mandatory. NSW draft legislation suggests a registry of donors for all states.

The Royal Hospital for Women in Sydney recently set up a voluntary register to enable past donors to provide more details. The hospital's Dr Steven Steigrad, who is director of IVF Australia, says: "Some donors have had a rethink and might now be comfortable about being contacted, while others insist that their requirement for anonymity continue."

Donor insemination at the Royal Prince Alfred Hospital remains anonymous, while Sydney IVF no longer accepts anonymous sperm donors. Dr Mark Bowman, clinical director of Sydney IVF and consultant in the department of reproductive medicine at RPA, believes identified donation, with all the associated safeguards and counselling, is ultimately going to be better for children conceived through such programs.

"Nowadays, prospective donors are counselled that the legislation may change and that identifying information may be accessed in the future," Bowman says.