Ann Summers boss Jaqueline Gold: 'We adore both our children, but Alfie’s suffering makes me angry and frightened'

When Ann Summers boss Jacqueline Gold gave birth to twins in May, her son, Alfie, was born with a severe brain disability. She tells Jane Gordon about her bittersweet experience of much-longed-for motherhood

Jacqueline Gold

Jacqueline with Scarlett, who's now seven months old

Motherhood suits Jacqueline Gold. After a seven-year struggle to conceive, and at an age when many women have put parenting behind them, the 49-year-old chief executive of lingerie chains Ann Summers and Knickerbox is relishing every moment she spends with her seven-month-old daughter Scarlett. Down on the floor, interacting with her baby – who is as calm and contented as her mother – it’s clear that she regards this child as the greatest achievement in her hugely successful life.

‘I love motherhood; I absolutely love it,’ she says with a soft smile that is instantly returned by her daughter.

But there is a shadow over Jacqueline’s happiness that makes this special time bittersweet for her and her 32-year-old fiancé Dan Cunningham. At the Children’s Trust in Surrey – a centre that cares for the severely disabled – Scarlett’s twin brother Alfie requires 24-hour care for a fatal condition known as alobar holoprosencephaly. It is an outcome to a longed-for pregnancy that the couple could never have imagined and which haunts them every moment of the day.

Jacqueline had always wanted children but the break-up of her first marriage – and her career as one of the most powerful women in British retailing with a business that has a £150 million gross annual turnover – had conspired to put her among the growing number of women who find themselves in their late 30s and early 40s battling with infertility. Having met Dan in early 2002 she decided that the time was finally right for her to have a family.

‘The most natural thing for a mother is the need to make everything right for her baby. I can do that for Scarlett but I can’t for Alfie’

The couple embarked on their first round of IVF later that year, followed by two more unsuccessful attempts. The physical and emotional demands of the treatment prompted them to part briefly. When they got back together they decided they would have one more try at IVF, this time in America.

Last autumn when Jacqueline and Dan discovered that she had conceived, they were ecstatic. The fact that Jacqueline was expecting twins only added to  their joy, but when she was 12 weeks pregnant the doctors discovered a problem. One of the babies was suffering from a rare condition in which the forebrain of the embryo fails to develop, causing defects in brain function and potentially in the development of the face.

‘It was a terrible shock. The consultant told me that the abnormality was fatal; that he [the baby] would not survive. Most babies with this condition would miscarry or be terminated. As it was a twin pregnancy, I opted not to have a termination. I regret that decision now. It was a very hard choice to make, and Dan and I were devastated by the news.’

To say that Jacqueline’s journey to motherhood has been difficult is something of an understatement. At 24 weeks she suffered bleeding and was admitted to University College London Hospital (UCLH) where she was to remain for the rest of her pregnancy. Six weeks into her stay, during a routine checkup with her obstetrician, she discovered that the prognosis for her ‘poorly’ baby was not as straightforward as she had been led to believe.

Jacqueline Gold

Jacqueline with her fiancé Dan Cunningham

‘My obstetrician made a casual comment about the baby surviving. When she saw the look on my face, she realised I had no idea this was a possibility. I went into shock because I had grieved for this baby at 12 weeks and had prepared myself not to give birth to a live baby. Now I had to come to terms with the fact that he might survive for a few hours or even a few days.’

Jacqueline had wanted a natural birth but accepted the doctors’ advice to have a caesarean. At ten o’clock on 5 May the first baby – Scarlett Rose – was born weighing 6lb 1oz..

'I was conscious throughout the birth, and to see her little face come up above the curtain, so perfect with a shock of dark hair, was the biggest joy. A minute later Alfie was born. He was crying louder than Scarlett…’ she says, pausing for a moment, overcome with emotion. ‘I can’t explain how upsetting it was to hear him crying as if he was in pain. Nothing had prepared me for that.’

Jacqueline’s recollection of the days after the birth is hazy. She knows she cried on and off as she struggled to breast-feed Scarlett and overcome the pain and trauma of the birth. It wasn’t until five days later that Jacqueline was told that her son was breathing without a tube and able to feed from a bottle. 

‘It was like my baby had been reborn – this baby that I was told wouldn’t survive. I cried every time I went to see him for the first four weeks. I felt such sadness when I saw how vulnerable he was, and I felt anger because I didn’t think he should have been brought into the world to endure such suffering. And I felt frightened. I still feel all those emotions today because every day I get closer to him and yet I know what the inevitable outcome will be.’

Eighty per cent of babies born with Alfie’s condition do not survive beyond six months, but there is a child currently being treated at Great Ormond Street Hospital in London who is four years old, and one who lived to be six. Although Alfie appears normal from the neck down and can hear and see, scans reveal no brain activity beyond the basic reflex functions. He is unable to process whatever he may be able to hear and see. He also suffers from muscle spasms and a degree of pain that makes him arch his back when he has his nappy changed and when he is picked up. 

‘The most natural thing for a mother is the need to make everything right for her baby. I can do that for Scarlett, but I can’t for Alfie,’ Jacqueline says softly.

Alfie needed constant care, and in July – concerned that he might die at any time – Dan and Jacqueline had him baptised in the hospital chapel surrounded by friends and family.

‘We thought it was the right thing to do. But when we looked at all the usual Christian readings you have on such occasions they were all about the future, so Dan and I decided we would just describe our journey. I thought it would be fine – I have spoken at the Royal Albert Hall to 2,500 people, so I thought it would be easy. But it was the hardest speech I have ever made and I choked my way through it.’

Alfie stayed in UCLH until he was four months old, when he was offered a place at the Children’s Trust where they have the facilities and expertise to give him the best possible quality of life. Jacqueline is full of praise for the staff, describing their dedication and kindness as ‘humbling’. 

Visiting Alfie is a priority in Dan and Jacqueline’s life, not just for their son but also for their daughter. ‘Every time we visit him we take Scarlett with us. We have made videos of them together so that when she is older she will know she spent as much time as she could with her brother.’

‘If we had been given the proper information, we would have opted for a selective termination’

An essentially positive person, Jacqueline has found the experience of the past six months difficult to comprehend. There have been surprises in their journey – Alfie is visibly content and has smiled a few times, and Jacqueline says that the love and concern that she and Dan share for their little son has strengthened and deepened their relationship.

Jacqueline’s one big haunting regret – and the reason that she is giving such an honest and emotional interview – is that she didn’t ask more questions of the consultant (she won’t name him) who told her unequivocally at 12 weeks that her baby would not survive. She is anxious to pass on the message to any other parents who find themselves in a similar situation that they need to keep asking questions and keep seeking other opinions.

She now knows that up to 20 per cent of babies with alobar holoprosencephaly do survive. When she compares that statistic with the five per cent chance of a termination of one twin causing the miscarriage of the other, she now thinks she would have made a different decision.

‘If we had known; if we had been given the proper information that would have enabled us to make an informed decision, we would have opted for a selective termination. We absolutely adore both our children, but to see the suffering that Alfie is going through is just so terrible I cannot put it into words.’

Work, Jacqueline admits, has offered her a welcome release from her anxieties. With the help of a laptop she has been able to adapt her working life to suit her new role as a mother.

‘Life goes on. Dan said to me quite early on, “I think you need to get back to work.” He thought I needed to get back to some sort of normality. And he was right. Obviously, it’s a juggling act, as it is for any parent. I get up at 6am to feed Scarlett and I don’t go to bed until after her last feed at about 10.15pm. We are very lucky that Scarlett is such a good baby.  We were told that sometimes in this situation – where one twin has complicated needs – nature makes the other child especially easy. But there are times when I feel exhausted.’

The pleasure that Dan and Jacqueline get from being with their daughter is tempered by their feelings of guilt and sadness for their son. Recently, they received a phone call from the staff at the Children’s Trust informing them that Alfie’s condition had suddenly deteriorated.

‘We rushed to be with him, overwhelmed by mixed emotions. In one way we want Alfie’s suffering to be over, but he is a huge part of our life, and we love him. You want what you feel will be best for him, but at the same time you don’t – does that make sense?’ she asks, tears glistening in her eyes.

Gentle and softly spoken (she has fought back tears throughout our talk), Jacqueline reveals that as her son fought for his life she was able to have her first real cuddle with him.

‘He hadn’t been taking food and he was very weak. He was very sleepy, almost serene, the most relaxed I have ever seen him. Normally it is difficult to cuddle him – he stiffens in pain – but that day I was able to hold him in my arms and properly cuddle him. It was lovely. And then he cried and took a little milk, and started to feed again.’

Jacqueline and Dan are aware that there may be many such dramatic visits in the weeks, months or years that Alfie may live. ‘In a way our life is on hold. We had planned a wedding this month, but have postponed it. We do enjoy our lives with Scarlett but there is this element of holding back because we do not know what will happen with Alfie.

'Normally we know what the future looks like, but because we don’t know if his life will come to an end tomorrow or in two years’ time, it is difficult. But, you know, I also want to stress that despite everything we are going through, we are really enjoying Scarlett. Being her mother is the greatest honour and joy,’ she says, looking down on her now sleeping daughter.


We are no longer accepting comments on this article.

Who is this week's top commenter? Find out now