independent

Sunday 20 April 2014

Real Life: Older mums' bum deal

Cutting edge: Professor Fergal Malone in Dublin's Rotunda Hospital

Irish mothers, especially older ones, are losing out because there is no national screening programme in place. In fact, prenatal tests still seem to carry some sort of stigma

THE average age at which women have their first child is now over 30 and increasingly mums are waiting until their late 30s to start a family.

As well as decreasing fertility, older mums also face concerns about genetic and chromosomal disorders. The Government has not kept pace with this trend and does not provide a prenatal screening programme.

The HSE confirmed there is no national policy on a population basis, with screening only being offered by doctors on an individual patient basis where there are risk factors.

There are three main screening tests for genetic and chromosomal disorders. These include early stage tests like the scan and blood test at 11 to 12 weeks and chorionic villus sampling (CVS), involving placental tissue sampling.

Later stage tests include amniocentesis, usually carried out at 14 to 16 weeks, during which small amounts of amniotic fluid are extracted from the womb. Both amniocentesis and CVS carry a small risk of miscarriage.

It can be difficult to access screening tests in Ireland and negative attitudes to screening also exist in the medical profession.

It was revealed in a study headed up by Professor Fergal Malone of Dublin's Rotunda Hospital that 70pc of Irish GPs and 38pc of consultants believe there are ethical issues for patients undergoing prenatal screening and diagnosis of genetic and chromosomal disorders.

The report also found that only one-third of GPs and a quarter of consultants could easily access prenatal screening for high-risk patients and they found only limited access for other patients.

"I was working in the United States for 14 years. My special area of interest is obstetric ultrasound, prenatal diagnosis, and maternal-foetal medicine," explains Prof Malone.

"It was a surprise to find that there was no sort of coherent service available for Irish women when I came back to Ireland."

Prof Malone found that some doctors were cutting edge but a lot of medics weren't aware of the range of tests available to pregnant women.

"There were a couple of doctors who believed that Irish women were somehow different. They felt it is all very nice having this service in New York or London but Irish patients wouldn't want it."

Rather than depend on anecdotal evidence, Prof Malone decided to carry out an Irish study on attitudes to screening babies before birth.

"In 2003, Professor John Morrison had carried out a study of 1,000 consecutive women and found that if scans and blood tests were available, 75pc said they would avail of them," said Prof Malone.

"Our study matched figures from around the world so Irish women are no different to others."

He set up the OSCAR clinic (One Stop Clinic for Assessment of Risk for foetal abnormalities) in the Rotunda Hospital in 2005.

Prof Malone explains that the tests are best carried out between 11 and 12 weeks into the pregnancy. At 18 to 20 weeks, the nuchal fold scan is very ineffective.

The tests are not restricted to older mums as genetic and chromosomal disorders can occur in pregnancies of any age, with two-thirds of Down syndrome babies being born to mothers under the age of 35.

"Everything is done in one visit and 98pc of women tested get a reassuring result," he added.

"Firstly, the test consists of a blood test and a scan which poses no risk to the pregnancy. We can have the results within the hour and most women get a reassuring result after this and go home."

If the results indicate a risk then chorionic villus sampling is done on the spot.

"There is a camp out there who thinks we are looking for babies to terminate but most people would be surprised to know that the majority of women who discover there is a condition then decide to continue with the pregnancy in a positive way," says Prof Malone.

Streamline

"The test can help parents prepare for the needs of their baby and streamline medical treatment that may be necessary at the birth," he says.

"We provide counselling for couples before and after the test," he adds.

Once a woman has made the decision to go ahead with prenatal screening it is not necessarily going to be an easy process. It's an opt-in test, meaning you have to ask for it first.

If you want to be screened you need a like-minded consultant or GP for a referral and you may have to travel to get it done.

"It costs €250 for the scan and blood test. We would love to have a situation where there is designated funding but at the moment there is no funding.

"We would prefer that mothers wouldn't have to pay," says Prof Malone.

With the full testing service only available in the Rotunda, Holles Street, Mount Carmel and limited screening in Cork University Hospital, pregnant women risk losing out in a postcode lottery if they live in other parts of the country.

Galway University Hospital offers CVS and amniocentesis, but not the scan and blood tests, and there is no charge to the patient.

Another point Prof Malone makes is that the scan on its own is not a good idea and it's better to combine it with the blood test.

"We have women from all over the country who come to the clinic.

"The main labs for the blood tests are in Dublin or else they are couriered to the UK," he explains.

Gabrielle Malone, programme director of Marie Stopes Reproductive Choices, believes it's cruel that parents have to wait until at least 18 weeks before their first scan.

"It is a worrying time. We get a lot of women coming to us just looking to get a scan to see that there is a heartbeat.

"It is awful that parents can be left picking up the pieces at 18-19 weeks when they are told there are abnormalities. This is about couples being given the time to weigh up their options.

Traumatic

"People are entitled to information and it's a private matter for couples to decide what to do with that information.

"If they can be told at 11 to 12 weeks there is a big difference to being told at 20 weeks. It can be a whole different decision.

"It can be very traumatic for a woman to find out at the delivery there is a condition. At least when you are prepared, you can talk to other parents about it and get the proper counselling," she adds.

One organisation that provides counselling for parents is Down Syndrome Ireland.

"We provide non-directive counselling," explains Down Syndrome Ireland president Mary O'Reilly.

"We have counselled parents who have known they are having a Down syndrome baby. It is very personal and we are not here to judge anyone either way. We feel very strongly that we are not here to tell people what to do."

According to Steven McMahon of the Irish Patients' Association we should value all patients' needs.

"There shouldn't be any stigma associated with the tests. Our society should provide for the needs of all women.

"By not providing these tests it raises questions on how society views the older mother," he says.

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