A mother's story: ‘We dealt
with our baby’s death in very different ways’

The loss of her one-year-old son, followed by four failed pregnancies, tested Heather Smith and her marriage to the limits. But counselling opened her eyes to alternative approaches to grieving
By Catherine O' Brien for MailOnline

Heather and her husband Campbell with Benjamin, six, and Alastair, four

Heather and her husband Campbell with their sons Benjamin, six, and Alastair, four

Heather Smith is sitting on the sofa, sipping coffee. Within a couple of hours, her sons Ben and Alastair will be home from school and noise and banter will fill her light and airy home.

Right now, however, in this early afternoon lull, stillness reigns. For some women, it might be almost too still. But Heather is not the sort who has ever wanted to weave, between childcare routines, some semblance of a hurried other life. She and her husband Campbell are bound, not by similar temperament, she explains, but by shared life goals. ‘We were always looking for the same things. Family, home, cat. Simple things, but major things to us.’

Little more than six years ago, those goals had become a seemingly impossible dream for Heather and Campbell. Their attempts at creating a family had been taken from them in the most devastating way imaginable with the death of their first-born son.

Callum had appeared, at first, to be a baby brimming with health, but at five months old was diagnosed with spinal muscular atrophy type 1, a rare genetic condition that is invariably fatal. Doctors had to tell his parents that every other child they conceived would stand a one in four chance of being affected with the same disorder, and indeed, even as Callum’s life ebbed away, Heather discovered that tests on the second child she was expecting had proved positive.

After facing the trauma of a termination, she went on to suffer three miscarriages and two failed IVF attempts before finally giving birth to the two healthy, tousle-haired boys that beam back from the assorted photograph frames in her living room. ‘For us, Ben and Alastair are the light at the end of a very long tunnel,’ she says.

At 44, Heather possesses a natural reserve that might forever have kept her from public view
had she not found that she had a valuable story to tell. In a new book, published by the Child Bereavement Charity, she writes with unflinching honesty about how grief – even when shared – can be cruelly alienating.

The loss of Callum and the ripple effects of bereavement tested her sanity and her marriage to its limits. Only through expert counselling did she come to realise that while she and Campbell, 42, love each other absolutely, they will never grieve as one. 

Callum was born in the summer of 1998, a halcyon time for Heather and Campbell. They had met seven years earlier through mutual friends while on a skiing holiday and shortly after they married in 1996 Campbell, an IT manager, was offered a job in Sweden.

Heather, a town planner, gave up her job to move with him and within a month of arriving in Trollhättan, a small town north of Gothenburg, she was pregnant. ‘We couldn’t have been more happy,’ she recalls. ‘As I watched Campbell hold our son for the first time I knew he was just as bowled over as I was.’

Callum, aged ten months

Callum, aged ten months

Callum was pink and round and perfect in every way, except for a hemangioma – a large lump of protruding blood vessels – on one leg.

The lump was benign, and they were advised it would probably disappear as he grew into boyhood. ‘Obviously I would rather it hadn’t been there, but I wasn’t unduly concerned,’ Heather says.

Callum fed well and grew rapidly and it wasn’t until he was around two months old that Heather noticed that, unlike similar-aged babies of her friends, he wasn’t kicking.

She consulted a Swedish paediatrician, questioning whether the lump was making his leg too heavy to lift. ‘He reassured me it was harmless and treated me like an overanxious first-time mother,’ she says. ‘But a tiny voice in the back of my mind began to tell me something was wrong – I just didn’t know what.’

On a trip back to the UK that autumn, the couple sought a second opinion. The appointment couldn’t be fixed before Campbell had to return to work in Sweden, so Heather’s parents, who live in Loughton, Essex, accompanied her. The paediatrician confirmed that Callum’s muscle tone was underdeveloped, but that the lump on the leg was not the cause. He referred Callum to a neurologist the same day.

From the moment he examined Callum, the neurologist was extremely concerned and mentioned the possibility of spinal muscular atrophy type 1. ‘I had never heard of it,’ says Heather. ‘And I didn’t want to ask too many questions until we had some test results.’

Spinal muscular atrophy is a group of disorders in which nerve cells in the spinal cord become damaged, breaking the link between the brain and the muscles.

SMA type 1, also known as Werdnig Hoffmann disease, is the most severe form; symptoms are usually evident within months of birth. Babies are limp and floppy, unable to lift their heads, roll over or sit unsupported. As their muscles deteriorate, they develop respiratory problems and 80 per cent die within the first year of life.

There is no cure. The condition is caused by a genetic mutation – if both parents are carriers of the defective gene, a child has a one in four chance of being affected – and a simple blood test is all that is needed to confirm diagnosis.

For us, our sons Ben and Alastair are the light at the end of a very long tunnell    

The following day, when Heather returned with Callum and her parents for the results, she could tell instantly by the look on the neurologist’s face that it was bad news. ‘He said: “There is no way I can sugar-coat this,” and told us that babies with SMA type 1 have an average life expectancy of nine months.

'My parents gasped, and I know he was expecting me to break down, but nothing came. I asked if Callum would suffer, and he said he needn’t. And then we left.’

Heather called Campbell, and both of them could barely speak through their tears. ‘My heart went out to him. He was all alone, in a different country, with his family in crisis, and we couldn’t even hold each other.’

The following day, she collected him from Heathrow. ‘We just hugged in the car park. People asked us if we were going to have Callum re-tested, but it would have changed nothing. The diagnosis was clear, there were no treatment options.’

The one thing Heather and Campbell decided they could do was make the time that they had with Callum as normal as possible.  They moved back to their home in Marlow, Buckinghamshire, to be closer to family and friends. Callum remained a happy, contented baby, ‘and even though we knew he was dying, we have a lot of wonderful memories of smiling and laughing with him’.

In June 1999, they celebrated Callum’s first birthday, ‘a magical day when it seemed like he could live for ever’. Five days later, however, Heather’s GP informed her that tests had showed the second baby she was carrying was also affected by SMA.

‘I had convinced myself that lightning couldn’t strike twice, but it had. Campbell and I knew, without even discussing it, what we had to do. There was no way we could bring another baby into the world with this dreadful condition.’

Heather Smith

Heather:  'I saw very quickly that my husband couldn't handle my tears'

Heather was admitted to hospital that night for a termination. The following day, as she awoke from the anaesthetic, a nurse told her Callum was on the children’s ward being treated for respiratory failure.

There ensued the most anguished 48 hours as she joined Campbell at Callum’s bedside. ‘Campbell was in tears, barely able to believe we could lose two children within the same day.’ Callum survived another night with the aid of resuscitation and tranquillisers, before doctors gently told them that the kindest thing was to withdraw medical support and let him go. He died shortly afterwards in their arms.

Heather remembers ‘walking out of hospital without Callum – just the two of us. It was the hardest thing, but neither of us was able to cry.’ They busied themselves with funeral arrangements, and a few weeks later flew to America for a much-needed holiday.

Only then, at the Grand Canyon, did Heather find herself breaking down, ‘not completely, but bit by bit, and mainly to myself, because I saw very quickly that Campbell couldn’t handle my tears’. For both of them, it became clear that grief was opening up a chasm.

‘We talked about Callum every day, about the things he liked to do, and the memories we had – we still do that – but I also needed to talk about how we felt, and Campbell just couldn’t. I knew he loved Callum as much as I did and was in just as much pain, but he couldn’t open up emotionally.’

Four months after Callum’s death, Heather realised she was sinking into depression. ‘I could feel myself going down and not coming back up and it terrified me.’ Her local hospital put her in touch with Jenni Thomas, a counsellor with the Child Bereavement Charity, and in their first session together, Jenni explained the difference between loss-orientated and restorative behaviour.

In grief, there are those, more often women, who are loss-orientated – they want to talk, look at photographs, cry, feel and not particularly get on with life. ‘They stay with the pain because it keeps them close to the lost child. It is very normal behaviour and very important to go with it,’ Jenni says. Others adopt a restorative approach. ‘They want to deal with practicalities, to fix, and to look to the future. It is not that they don’t feel the loss, but men often tell me they don’t feel better for a good cry.’

In our darkest moments we couldn't see our way through, but the fight in me never left    

For Heather, the explanation was an epiphany. ‘It was so obvious that that was what was happening in our case. Campbell wanted me to restore and I needed to concentrate on the loss. He couldn’t centre on the loss because he needed to restore.’

While Heather's natural instinct was to withdraw from the world, Campbell insisted that they socialise regularly with friends, and even that she join him on a golf day just a month after Callum died. He booked holidays and spent the week of the first anniversary of Callum’s death building a deck in their back garden.

‘I would never have initiated doing any of those things, but getting out, being with other people, helped pull me out of my depression. And Jenni helped me realise that Campbell and I weren’t ever going to come together by talking about our feelings because he couldn’t do that.’

Heather continued to see Jenni regularly for more than two years, but Campbell wouldn’t contemplate counselling and she wasn’t going to force him into it. As he remained strong and silent, she decided to stop crying in front of him. ‘I went back to work and when I left the office each day, I would cry for half an hour as I drove home, then as I pulled up on the drive, I would stop. That became my time to cry.’

They continued to talk about Callum ‘in an everyday way’, explains Heather. ‘We’d talk about the things he would have liked, things we had done with him. We could reminisce, Campbell was OK with that, but he didn’t want the emotion – we didn’t talk about how we felt.’

They were unswerving in their determination to have another child and each miscarriage was, inevitably, an agonising setback. All three happened early into the pregnancies and were unexplained.

‘I did begin to feel resentful towards Campbell then,’ Heather says. ‘Not because I blamed him for what we were going through, but because it would have been good to talk. I felt angry, but I never raged at him – I knew that there would have been no point.’

They put themselves forward for IVF treatment after reading about a programme at St Mary’s Hospital, in Paddington, London, where genetic material is extracted from a fertilised egg to test for SMA before implantation. ‘I just needed to do something, and Campbell said, “Let’s go for it,” because he could see it was a chance to move us forward.’

When the IVF failed, he was equally happy to talk about adoption. They had just started the process when Heather discovered she was pregnant naturally, with Benjamin, who tested clear for SMA and was born three years after Callum died. He’s now six, and was joined 16 months later by Alastair, now four.

‘I like to think we are living proof that although life can throw you devastating blows, it will right itself in time,’ says Heather. ‘In our darkest moments we couldn’t see our way through, but the fight in me never left.’ Both boys know they have a brother ‘in heaven’.

Photographs of Callum sit alongside their images on a side table. ‘We didn’t want a shrine. We just wanted Callum to remain part of the family.’

Heather is in no doubt that the counselling she received saved her and Campbell’s relationship. ‘I often read about couples who talk through their problems and how important it is to keep the communication channels open. But not all of us can do that. Jenni helped me realise that it was OK for me to deal with Callum’s death in my way and to let Campbell deal with it in his.’

For Heather and Campbell, it was, in the end, what was left unsaid that kept their marriage strong.

Heather’s story features in Farewell My Child, published by the Child Bereavement Charity (£14.99). To order, visit childbereavement.org.uk or call 01494 446648. The Child Bereavement Charity supports families and educates professionals both when a child dies and when a child is bereaved