'Our baby didn't cry. We did it for him'

Published on Saturday 21 November 2009 20:00

Nothing could have prepared Phil Johnson and his wife for the heartbreak of losing their first child, Finlay, who was stillborn, but they soon discovered that hundreds of other couples shared their pain

It is easy for those who have not experienced the death of a baby to underestimate how distressing it can be

IT WOULD have been my son's first birthday last week. Looming larger than any other on my calendar, it was a date I dreaded all year. What could have been a celebration was going to be anything but. It was a simply a case of getting through it.

There were, of course, no presents. There were no birthday cards. No cake. No party. Instead my wife, Juliane, and I spent a rainy Monday afternoon huddled under a commemorative metal tree at Saughton Park Winter Garden in Edinburgh laying a flower and mourning our loss.

Finlay, our first child, was one of 325 babies stillborn in Scotland last year. In a week that put us through the emotional wringer once more, the shocking figures presented in a report to the Scottish Parliament last week, two days after Finlay's anniversary, were a reminder that we are not alone.

If the intention of the "Saving Babies' Lives" report submitted by Sands (the Stillbirth And Neonatal Death Society), was to, first, ring alarm bells and, second, persuade the Scottish Government to act, it appears to have been a success. A promise last week of 20,000 over two years to improve bereavement support was little more than window dressing. While it was welcome, the most important development was what Sands chief executive Neal Long called a "definite commitment" from ministers to put the issue firmly on the political agenda next year. Not before time.

Almost 500 babies die in Scotland every year. One in every 200 babies was stillborn in 2008, making it ten times more likely than cot death. In 2008, 168 babies in Scotland died within four weeks of birth, 122 of them within the first seven days of their lives. Of the 53,000 babies born north of the Border every year, about 8,000 are admitted to neonatal units. That equates to one in seven.

In the UK, 17 babies die every day. Ten are stillbirths, seven neonatal deaths. That means almost 6,500 baby deaths a year.

With the stillbirth rate remaining unchanged since the 1980s and Scotland possessing one of the highest perinatal mortality rates – that is, babies who are stillborn or die within the first seven days of life – in Europe, the case for government action is compelling. Neal Long describes the situation as a "national tragedy" and is leading the campaign for more research and more resources for understaffed NHS maternity and neonatal units. Until now, the message has fallen on deaf ears.

It is easy for those who have not experienced the death of a baby to underestimate how distressing it can be. At a support group meeting I attended earlier this year one bereaved mother explained why she had to lock herself indoors for months to avoid the prospect of setting eyes on another baby in public. She was too afraid of what she would do.

If ever a story served to highlight the extent of the misunderstanding and insensitivity out there, it was the one told by a bereaved mother who, just a few days after delivering a stillborn baby, was told by her boss to submit a doctor's sick line if she was going to be off for longer than a week. She should have been entitled to full maternity leave.

Behind the facts and figures are real individuals who have had their hearts broken in a way that they never expected or prepared for. Modern medical advances may have created the impression that having a baby these days is a straightforward, risk-free procedure guaranteed to be the happiest moment of your life. But the figures reported last week show this perception to be wrong.

I was guilty of falling into the trap. Even though there had been complications during Juliane's pregnancy, I never prepared for the worst. I focused so much on positive thinking that any hint of fear was flushed away as soon as it threatened to rear its ugly head. So during the pregnancy I thought about buying a car seat and a cot. I worked out how much nappies would cost and how many our baby would go through in one day. I was an expectant parent. I was excited. Never for one moment did I imagine the fate that was about to befall us.

Juliane, then 33, was admitted to the Simpson unit at the Royal Infirmary of Edinburgh when her waters broke suddenly at 25 weeks. Even then the potential seriousness of our situation didn't register properly. The baby's heartbeat was fine. Juliane was in the best place and, when she didn't go into labour straight away, it was a good sign. I convinced myself that everything was going to be all right.

Four days passed. A doctor from the neonatal unit visited to discuss the implications of giving birth to a very premature baby. It involved lots of tubes, an incubator, and a fight for survival. But it didn't hit home. That was not going to happen to us. All I focused on was the best-case scenario, hanging on for another few weeks and having a premature baby who would turn out just fine. Remaining positive, I thought, was the best way to support my wife.

It was a two-way coping strategy. As a Simpson's midwife herself, Juliane understood our predicament better than I did. She had work colleagues looking after her and making her smile. So she made me smile too.

When I arrived to visit on the Sunday evening, though, everything changed very quickly. Juliane was in pain and the doctor had been called. Within a few minutes, emergency mode set in. Medical staff filled the room and we were whisked to the labour ward in a hurry.

There was little time for explanations. Midwives and doctors darted in and out with purpose and the atmosphere of urgency was palpable. My heart thumped like never before and I was soaked with sweat. Each time I felt faint, I had to jolt myself and gulp a cup of water. I knew I could not afford to conk out at this stage. Juliane's pain intensified and she needed my support. So I told myself repeatedly to get a grip.

Everything happened so fast. First, we learned he was a boy. The next words I remember came from a doctor. "There's a heartbeat," she said, just seconds before he was taken away to the resuscitation area without us setting eyes on him. The whole episode had lasted little more than an hour and my head was spinning.

Only a few minutes later, the door opened. Our son was wrapped in a white blanket and we were about to see him for the first time. It was the moment when the roof came crashing in on our world and changed it forever.

For 12 minutes doctors had tried to resuscitate him, but Finlay's heart had stopped the moment the umbilical cord was cut, and could not be restarted. "I'm really sorry," were the doctor's crushing words. "We did everything we could."

The baby we had longed for was small and beautiful. He was in our arms, but the outcome we had never fully prepared for had become a horrible, unfathomable reality. Our wee boy was not moving and he did not cry. We did the crying for him.

Bringing home pictures and a box of mementoes instead of our baby two days later was the hardest part, leaving us utterly helpless. Once I learned to accept that the emptiness was going to be with me for a while, I decided to adopt a productive coping mechanism. So I entered a marathon, raising money for the hospital charity run by the midwives who supported us, and then another. It was the only solution I could come up with.

Losing a baby can drive a wedge between many couples, but the experience brought Juliane and I closer together. We share the pain, we talk about it and the bond between us has never been greater than it is now.

A year on, we have accepted that Finlay's passing was for the best. We take great comfort from the knowledge that he did not suffer. We remember him as he was – in peace – and try to remember that there are others worse off than us.

Juliane's pregnancy was categorised as high-risk from an early stage and the postmortem came up with most of the answers to our questions. Sadly, for many parents there are no answers. Over half of all stillbirths are unexplained, the majority of them in low-risk pregnancies. Despite this, little research is taking place to understand stillbirth issues in Scotland.

While Juliane and I have nothing but praise for the staff and the quality of care we received, our experience is not shared by all bereaved parents. Many we have met feel let down by the service and others feel that their baby could have been saved.

Perhaps some bereaved parents blame the NHS simply because it makes them feel better and helps them cope. But the number of genuinely distressing tales of those who feel they have received derisory care serves only to illustrate just how under-resourced and overloaded the maternity and neonatal services are. The overstretched staff who work there tell the same story.

Juliane has returned to work at Edinburgh's Simpson centre, the biggest maternity unit in Scotland, where more than 6,000 babies are born each year and where the doors often have to close because there are not enough beds. The planned building of an additional midwifery-led unit cannot come soon enough.

No amount of research or extra resources would have saved Finlay. But until the death of 500 babies a year in Scotland is recognised as a serious problem and acted upon, avoidable deaths will continue. More parents will be let down and made to suffer a lifetime of pain.

I've been told the pain will ease but will never go away.

• Phil Johnson is the sport production editor for Scotland on Sunday. [e-mail] For further information about the issues discussed in this article, phone the Sands national helpline on 020 7436 5881 or log on to www.uk-sands.org