A very special little boyWith official figures showing the number of abortions of Down's syndrome babies has trebled in recent years, the Down's Syndrome Association has accused doctors of pushing women carrying Down's babies into having abortions.
After her first pregnancy ended in a miscarriage, Carole Arnold was excited when her son George was born by emergency caesarean section at 36 weeks. But when he was just a couple of days old the doctors told her that George had Down's Syndrome. Carole says, "I remember starting to cry before the paediatrician had even finished her sentence, and I remember holding on to my husband's hand for dear life. And I felt from that first point that together we would manage whatever was thrown at us."Carole tells her story of bringing George into the world.
A longed for babyAfter losing her first baby in January 2004, Carole was keen for an early scan during her pregnancy with George and at 13 weeks she had a nuchal scan which showed that he had a 1 in 5,715 chance of having Downs Syndrome. Carole says, "It sounded pretty good to me, so I put it to the back of my mind quite quickly." Apart from the 20 week scan picking up talipes (club foot), Carole's pregnancy continued in an uneventful way until 36 weeks when George was born by emergency caesarean after he stopped growing and began behaving erratically. Saying helloCarole remembers that George was screaming when he was born but quietened when he was held up to her face. "I remember Keith saying in a panicked voice that he had gone quiet and the anaesthetist whispered 'He is just saying hello to his mummy'. "That, for me, was the beginning of motherhood." However, within an hour of the birth, what Carole terms 'a particularly unhelpful midwife' had noticed that George had a single crease running across the palm of his hand, one of the signs of Down's Syndrome. "She said to me, 'so did you know he has Downs Syndrome?'" Carole remembers. "I didn't panic at that stage, I just thought that I needed to see him for myself and that then I would know." Grief and triumphWhen Carole and Keith were told their son had Down's Syndrome, they were concerned for his immediate condition. However, Carole admits, "It really didn't take me long to start worrying about the future and pictures of old, dribbling men with Down's Syndrome in horrible clothes with bad haircuts came to mind quite quickly. "There is definitely a period of grieving which occurs. It is really hard to put into words and I felt for a long, long time that the feelings I was having were disloyal to George, but I grieved for the 'normal' baby I had been expecting and the 'normal' childhood I had hoped for my baby." Her turning point came when, after struggling to breastfeed George, she was told that Down's babies can't breastfeed anyway. "From then, until forever, my views on George are that he may not be able to do things the same as other babies but I will always help him to try and I will never give up on him. "I expressed breast milk for him for over 4 months and he had it in a bottle with a specially adapted teat that he could manage. "He tried, and that is all I will ever ask of him." He looks like GeorgeCarole also recalls how concerned she was about other people's reactions. "I felt that I had to take on the surprise, the disappointment and the uncertainty for all of our family and friends. People didn't know whether to say congratulations to us, or sorry. In fact several people did say sorry to me. "I hated it with a passion when people looked at George and said 'Oh, well you can't tell, can you?'" With one of her closest friends, a mother she met in the Special Care Unit, Carole came up with the response, "No, he looks like George." Life's changesCarole had always planned to return to her job as a Senior Environmental Health Officer after her maternity leave, at least on a part time basis. However, she says, "The reality of my life now is that George has regular medical or therapy based appointments. It has not been possible for me to return to work as I could not ask or expect anyone else to do for George what needs doing. "It has been quite a head struggle going from being a professional person at work, to mum at home but I have to say, in so many ways, I have never been happier or more satisfied in my work!" All children are differentRaising children raises many challenges for all parents and Carole says that looking after George is no different in many ways to looking after any other child. "I think though that, as with any other child, every Down's child is very different and faces very different challenges." Some children with Down's Syndrome may develop normally, perhaps reaching their developmental milestones a little later than their peers whilst others can suffer from a number of conditions, the most serious being congenital heart problems. Carole says, "We are very lucky that one of the most common problems - heart defects - is something we have not had to face with George." But George does have some problems linked to his condition. He is deaf and wears a hearing aid and, although many children with Down's Syndrome need extra help with communication, his speech has been further delayed because of this. He also has talipes to both his feet as well as severe constipation, both of which are as a result of poor muscle tone in his lower body. "Having a child with special needs presents additional challenges," Carole says. "But just as with any challenge, you manage it by learning about the challenge and preparing yourself for it in the best way possible." Carole has set up a buddy scheme with other mums to children with Down's Syndrome to provide a real life point of contact, and give support and guidance through the system that parents of newly diagnosed babies find themselves in. Pulling togetherCarole stresses the importance of support, especially during the early months. "Keith and I have been married for 10 years and we both have extremely supportive parents and brothers. "We have had to pull together over so many of the challenges we have faced and although Keith undoubtedly finds it hard to keep up we are doing this as a team." The future for Down's SyndromeAlthough Carole did not know that George had Down's Syndrome until after he was born, she admits that with hindsight there were many things that could have alerted the medical profession earlier. "Downs Indicators were picked up on scans such as decreased blood pressure in the umbilical artery, a short femur length measurement, excess fluid and an unusual head shape, but no-one put two and two together until George was actually born." However, Carole is adamant that even if she had known about her son's condition earlier, she would not have terminated the pregnancy. "I can be quite confident that I would not have terminated my pregnancy," she says. "Having lost a baby in pregnancy once already, I could not have contemplated ending another one." Recent statistics show that 94 per cent of women choose to end their pregnancy on hearing their unborn child has Down's Syndrome. Most recently, a woman was offered a termination, which she turned down, at 35 weeks pregnancy because it was discovered her baby had the condition. Carole is angry that this can even be contemplated. "How can we possibly hope to achieve integration and acceptance for our children in society when the medical profession give their lives so little value before they are even born and the extent of the effect of their Downs Syndrome is known? "It seems to me in a case like this that it is the very fact that you can test for Downs Syndrome that is the problem." The Down's Syndrome Association agree. "Some health professionals have outdated or prejudiced views about people with Down's Syndrome owing to a lack of training about the condition. "They are unable to therefore provide a balanced view on what life would be like for a family who had a child with the condition. "Many families will go through traumatic late terminations owing to the outdated views of their health professionals." Carole is quick, however, to praise the medical profession. "The physios, speech therapists, occupational therapists who we see weekly are my lifeline," she says. "They help me to help George be the very best that he can be, and that is all that I wish for him.... just like any other mum." Where to next?
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