Fighting spirits

Jennie Fickling hadn’t expected to find herself pregnant with twins. She had been told she could never conceive again after the birth of her first child, Laura, nearly killed her.

An artery in her uterus was slashed during an emergency caesarean. By the time Jennie’s mother noticed the way her unconscious body was haemorrhaging, several hours after the operation, Jennie had lost most of her blood.

An emergency operation saved her uterus, but doctors told her it was too damaged to give her another child. That was the first thing they were wrong about. Five years later, Jennie found herself pregnant again.

The boys had an emergency delivery at 28 weeks and featured in a 1994 Age article, Littlest rays of sunshine, about the life-and-death struggle of tiny babies in a neo-natal intensive care unit. That wasn’t the end of their near-misses, but her fragile babies are now boisterous little boys celebrating their fifth birthday.

“There’s been a thread running through all this about being saved in the nick of time,” says Jennie.

For Jennie, this landmark is a chance to talk about the family’s experiences in the hope that it will help other parents facing premature delivery or multiple births and encourage hospitals to become more sensitive to their needs. “I’m very grateful that all three of my children, and myself, are now happy and healthy,” she says, “but I do feel for other families going through this, because there are problems in the very system that is trying to help them.”

For Jennie, the problems began with the attitude of the professionals towards a foetus that was not developing normally. Seven weeks into her pregnancy with the boys, Jennie was hospitalised for dehydration following severe vomiting. An ultrasound revealed two shocks: that she was carrying twins and that the smaller one was dying. “We were devastated,” she says. “I felt like I was having a baby and having a miscarriage at the same time.”

At every weekly ultrasound, she was told bluntly, “He’ll be dead next week”. When he wasn’t dead by 12 weeks, the prognosis was amended to “massive chromosomal abnormality” and Jennie was advised to terminate him.

“They told us that Sam might die as a result of us leaving Paul (the weaker child) there,” she says. The medical staff told her she’d be better off with one baby anyway, but Jennie felt enormous grief at the prospect of losing this child.

She and her husband, Geoff, received no formal counselling, so she researched the options herself. She refused pressure to undergo chorionic villus sampling (CVS) to test for abnormalities, because it had a higher risk of miscarriage than amniocentesis.

During amniocentesis, she found herself lying on an examination table arguing with a doctor who wanted to test both babies because “you might as well”. Jennie refused, fearing that this, too, would increase the risk of miscarriage, so only Paul was tested.

He was found to be absolutely normal. Doctors concluded that his smaller size was probably due to him having been conceived a week after Sam. Says Jennie, “I thought, ‘You put us through hell telling us this baby might be deformed without telling us it could all be due to something completely normal?”‘

The next near-miss came at 28 weeks, when Jennie went to hospital feeling “strange”. The doctor she was seeing for this pregnancy instinctively sensed something was badly wrong and did an emergency caesarean. Once inside, she found the old scar on Jennie’s uterus had broken wide open. If she had not undergone the surgery, the boys would have been born into Jennie’s stomach and died within minutes. Jennie would probably have followed soon after.

Both babies needed intensive care. Sam improved within a week, but it was two months before Paul could survive without oxygen supplements. He suffered repeated brain bleeds and serious infections.

Jennie believes that Australian hospitals don’t allow for the special needs of families struggling with the aftermath of multiple births, which are often premature.

She wanted to sit with her babies for hours, stroking them and talking to them, trying to encourage their will to live and calm their distress.

If she held Paul’s tummy and kept him calm, he needed less morphine, which was used to stop him thrashing about and tearing out the tubes keeping him alive. But she had to choose between the boys because they were assigned to separate rooms.

Later she was discharged – on Mother’s Day – without them. “I just cried and cried all the way through lunch at a restaurant across the road from the hospital.” Leaving her babies behind was the most traumatic part of the whole ordeal, she believes now: “People don’t understand the pain of separation, the fear of getting a phone call that one of them’s going to die.”

Later still, she was forced to take Sam home and leave Paul behind. Such separations can be disastrous for maternal bonding, she says: “In a lot of overseas hospitals, they will send a baby home on oxygen rather than separate twins, or they will admit the mother of the baby so that they can all stay together.

“(I was) getting to know Sam and getting to love Sam, and it got to the point where Paul was just a burden, an obligation. I didn’t want to visit him; I just wanted to stay with the baby at home and be a happy little family.

“I’ve found out since that there are cases where women actually have not been able to bond with that second baby and have ended up adopting that baby out. Luckily, that didn’t happen with us because Paul was just adorable.”

Jennie also felt her mothering was undermined by the hospital’s approach to breastfeeding. She had heard of a problem called “sucking confusion”, where small babies who are bottle-fed become accustomed to rubber teats and cannot suck properly on a breast, so she insisted that Paul be fed expressed breast milk through a tube when she was not there to feed him herself. Some nurses told her she was a bad, cruel mother, she says; one doctor sniggered when he read the request on Paul’s cot.

At one point, Jennie did not see Paul for two days because Sam was having surgery in a different hospital. When she returned, she found that a resident doctor had overridden her request and ordered that Paul be bottle-fed.

Paul never attached to her breast again. A determined Jennie pumped breast milk and fed it to him from a bottle for 12 months, while breastfeeding Sam normally.

She says passionately: “I believe with all my heart that Paul would have died if it wasn’t for that breast milk. I know it. Premature babies who are not breastfed are 10 times more likely to die from NEC (necrotising enterocolitis, a disease that destroys the gut) and have much higher rates of all sorts of other problems. Breast milk should be treated like blood, revered for its life-giving properties.

“They don’t tell you this in hospital. The nurses are told to be careful of women’s feelings and not to pressure them to breastfeed. Just imagine if Paul had died of one of those infections and he wasn’t breastfed, and then I had found out how important it was. I think the day is coming when someone is going to sue a hospital for not having been given an informed choice about breastfeeding.”

The crises took their toll. By the time the boys were three months old, Jennie felt she was living under a black cloud. She and Geoff saw a counsellor who said they did not have post-natal depression, but post-traumatic stress syndrome. Says Jennie: “I can understand why there is a very high rate of divorce among people who have twins or children with health problems. It’s not that we fought or didn’t get on – and Geoff was wonderful with the babies _ it’s just that you don’t talk for months. I think the first year is a war zone with multiples.”

The final ghastly incident came one morning when the twins were five months old. Jennie had put them down to sleep, but Sam woke up grizzling soon afterwards. Jennie, trying to work on a computer, ignored him for five minutes, hoping he would settle. He didn’t. She went into their room and found that Paul had wormed his way under the bedclothes and had stopped breathing. He was limp and blue. She shook him and he began to breathe, but erratically. It meant an ambulance trip and another week in hospital so that he could be monitored.

“They couldn’t explain it,” she says. “They thought it might be a throwback to the prem problem of forgetting to breathe, or maybe it was just a classic cot death situation.”

People cluck with sympathy when they hear what Jennie has been through. She says she doesn’t need the sympathy.

She wanted this story written so that other parents suffering similar problems can see that families can survive it all, something she wasn’t altogether sure of when she was going through it herself.

Looking back, she says she is actually grateful for what she experienced. “I couldn’t possibly be who I am without all of this. The only regret I have is the pain my children went through. From my point of view, I don’t have any regrets because I have learnt so much. I wouldn’t want to be the person I would be if this hadn’t happened. She was selfish, self-centred and lacking in compassion.”

She hesitates, trying to pick her words carefully. “I have read a few stories lately of people who have chosen not to have children. Without being critical of them, because I think it’s important that everyone make their own decision about these things, I have got a suspicion that some people who choose not to have children do it because they are frightened of the unknown and frightened to put themselves in a difficult position.

“If that’s their reason, I think that’s very sad, because what I have learnt is that life is a rollercoaster and you just have to go with it. It’s the hard things you learn about yourself that help you grow.

“If you are constantly trying to shield yourself from difficult things happening to you, you are not really living at all, you are just existing.”

First published in The Age.