This blog became the center for such a controversy about five years ago. Since then I continue to have stories e-mailed to me about such extraordinary moms and also about babies with the condition holoprosencephaly.
That condition made the newsfeeds twice this week. This first story is from the UK, excerpts below.
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.
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.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.’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.’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’.
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.’'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.
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