Loss of unborn babies a hidden national tragedy

Kat Thomas had moulds made of her baby Emily's hands and feet. Photo / Kellie Blizard

New Zealand women are losing their babies to stillbirth at some of the highest rates in the developed world, and medical experts say the Government is doing little to save their lives. Sally Webster reports on a tragedy that devastates hundreds of families every year.

Kat Thomas' contractions were "all over the place" as she went into labour. She had been told her body would do this and felt it was nothing to worry about.

She had a scan just two days earlier, her hospital bag was packed and she and her partner had the baby room ready, complete with furniture, toys and books in their newly renovated South Auckland home.

Thomas had called her midwife and tried to relax. But then another startling level of pain started in her upper abdomen and she began vomiting.

Fiance Brett Yearbury phoned the midwife again. "She doesn't look right," he said.

Within an hour she was in Middlemore Hospital, the focus of three midwives, two consultants, and a registrar. Thomas' blood pressure had risen from 120/70 to 180/136, her placenta had separated from the uterus and a scan showed the baby's heart had stopped beating.

Thomas was losing vast amounts of blood, at that point collecting unseen in her uterus.

She was diagnosed with an extreme form of pre-eclampsia, dubbed Hellp. At 37 weeks into her pregnancy her baby had died in her uterus.

The registrar broke the news to Thomas, saying it was essential to continue with a vaginal delivery to bring her blood pressure down and ensure her own safety.

For an hour or so afterwards the young mum was stable enough to hold the body of her 2.85kg infant.

However, the pool of blood quickly gathering on the freshly mopped floor indicated severe haemorrhaging, landing Thomas in theatre, where she had to fight for her own life.

She won.

After two days in intensive care and a further eight under close watch in the hospital, she returned home for her baby's memorial service and cremation. She held her baby again, and watched Yearbury wash her body. They gave her the name Emily.

That was all they could give her.

Kat and Brett's story certainly twists the heart but there are hundreds more stillbirth stories in New Zealand every year, and millions more worldwide.

Statistics New Zealand figures say 420 of last year's 61,403 pregnancies were stillborn, dying at between 20 and 40 weeks of pregnancy.

Parameters of stillbirth vary around the world; the international measure is 28 weeks gestation, but New Zealand registers babies from 20 weeks into the pregnancy, or from when the babies weigh 400g.

According to the World Health Organisation, stillbirth is seriously underfunded. It sits behind other health priorities such as diarrhoea, HIV/Aids, tuberculosis, traffic accidents, and any form of cancer.

Even though public and medical awareness is building, critics say progress is far too slow.

New Zealand's leading expert, Professor Lesley McCowan of Auckland University's gynaecology and obstetrics department, says three million babies are stillborn every year. "That's more deaths than from HIV."

SARAH NUMAN is trying to turn this apparent lack of interest around. Numan is now the mother of four healthy children but she has experienced the heartache of losing three babies.

Hope died at 19 weeks in 2003 and is buried on the family plot in Christchurch, a plot they secured after the baby's death. Then in January of 2007 she lost Noah at 26 weeks and, in November that same year, Willow died at 15 weeks.

Numan points out there is no legal requirement to bury a child born under 20 weeks.

"So when my babies died we could have buried them in plant pots, or even in the garden. It may sound harsh, but many families do bury the baby in a special pot and it goes round with them from property to property."

Numan has set up a Manukau branch of the Sands charity, a national and international stillbirth and neonatal death support group for parents, advising them on rights over the baby's body, burial, registration and grief issues. Numan has worked to create a system at Middlemore where the hospital bereavement team gives baby-packs to parents just after they've lost their baby. These white paper bags contain pamphlets, inkless hand and foot print kits, teddy bears and other symbolic trinkets and documents.

The bereavement process has come a long way since the inception of Sands worldwide. Health minister Tony Ryall thanked Sands NZ for its assistance with the Maternity Consumer Survey 2011, the first of these surveys to include the thoughts of bereaved mothers.

AFTER THOMAS got her baby bag, she phoned Numan to cast Emily's hands and feet in plaster of paris, a free service from Sands and Lisa Wood of Features Forever, who does her "angel casting" service for babies who have died.

"Often, people who had a baby who passed away will find it hard to see a photo of the baby on the wall, but a pair of cast hands or feet is easier to deal with," explains Wood.

There are many causes of stillbirth but most common are spontaneous preterm birth, congenital abnormalities, growth restriction leading to placental issues and, of course, hypertension related to pre-eclampsia.

The Australian and New Zealand Stillbirth Alliance says "around one-third of stillbirths are associated with factors relating to care, largely around delays in detecting and responding to emerging complications and undetected fetal growth restriction".

The pre-eclampsia that Thomas suffered accounts for only 5 per cent of stillbirths, but Thomas and Yearbury are far from alone in their grief. Thomas discovered this when she appeared on Breakfast as the winner of an online competition, and took the liberty of talking about "losing our baby girl".

In the traditionally quiet, grief-stricken circles of parents who have lost babies to stillbirth, it is almost unheard of to speak publicly.

Yearbury says he will never feel comfortable opening up about his experience. Not even as part of a men's support group? "No way."

But he does offer one piece of advice to other fathers. "Give full support to your grieving partner," he says.

"Truth be told, you can't do much. You just have to be there. You can grieve, and you can probably notify other family members on her behalf. But you can't fix anything."

It took time, but eventually Thomas decided she wanted to open up and encourage others to do the same.

And she was amazed at the number of responses from other families who had lost a baby.

Now Thomas has started the Emily's Corner book donation project, to provide New Zealand's libraries with collections of children's books dedicated to stillborn babies.

She says she has been overwhelmed with emails and has received nearly 50 books from families with experience of stillbirth already.

The 6th Annual Report of the Perinatal and Maternal Mortality Review Committee says that for every 1000 births, an average 5.6 babies died between 20 and 40 weeks of pregnancy in 2010.

Numan says Sands places New Zealand's stillbirth rate at third-equal with the UK, for developed nations. No one knows why the figure is so high.

In 1986, 250 of 51,798 births were stillborn, a similar ratio to the present day. The rate of stillbirths had plummeted between 1951 and 1986, but the survival rate plateaued.

Last year, after British television actor Amanda Holden publicly revealed she had lost her unborn baby boy seven months into her pregnancy, the Daily Mail reported that 10 babies were stillborn in the UK every day, almost 4000 babies a year, or one in every 200 born. Though many parents' greatest fear was cot death, the paper said 10 times more babies died through stillbirth.

The paper posed a question: "Why, at a time of so many medical advances, are apparently healthy babies dying in the last few weeks of pregnancy?"

The contrast is similarly stark in New Zealand and the same question might be asked here. For every 1000 healthy babies, two will die from cot death; for every 1000 live births in New Zealand, five will be stillborn.

The rate of cot deaths has declined dramatically over the past 10 years. Now, organisations such as Sands Manukau, which relies entirely on volunteers and has just been turned down by three charitable funding streams, is pleading for a similar public campaign to reduce stillbirth rates.

MINISTRY OF Health maternity services senior clinical adviser Bronwen Pelvin agrees that women and families who lose a baby face incredible grief and loss but she says everything possible is done to avoid such deaths.

She points to initiatives such as the Maternity Quality and Safety Programme and the work of the Perinatal and Maternal Mortality Review Committee to identify areas where lives can be saved.

The Maternity Quality Programme has identified 12 maternity care factors that contribute to healthy live births and aims to ensure those factors are implemented nationwide to avoid deaths in the future.

At the University of Auckland, McCowan and her team published world-leading research last year on how maternal sleep position affects the baby. And, working with Professor Robyn North, they are developing a blood test that would be offered to mothers at 15 weeks gestation to diagnose their predisposition to pre-eclampsia.

Those testing positive will receive a simple treatment of aspirin and calcium early in their pregnancies to reduce the risk, plus intensive monitoring to detect the condition's onset.

It might well be hard for Thomas to avoid imagining the implications for baby Emily's survival if such a test had been in existence when she was pregnant. McCowan says: "Stillbirth is still not a national research priority. There is still an enormous problem in that one in 200 mothers tragically lose their babies after 20 weeks of pregnancy in New Zealand. This rate has not fallen in the past decade."

If you or someone in your family has suffered a stillbirth, you can go to Sands.org.nz or phone 0800 SANDS4U.