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special feature No connection fees, no contracts http://www.ozzienet.net/qtm Douglas Edwards 0500 517 744 0419 407 217 For my Cyber Business Card send an email to: qtm@cyberbusinesscards.com in the subject line, Thanks FUNDRAISING CAN BE FUN • All the school recorded on a teatowel • Pre-Schools specially catered for • A sure-fire seller & irresistible keepsake Class Act Promotions Ph: (02) 9550 5947 www.cap-fundraising.com Failing to perform at school? Reading problems? Concentration? Specialists in ADD & Dyslexia Intensive programs to help all Listening, Language & Learning Problems!! Further Information: Kay Distel M App Sci. Ed. Consultant Phone: (02) 4423 1140 Mob: 0425 242 123 www.soundeducation.com.au byronchild 18 bc113010 bc113005 Diagnostic and invasive testing using amniocentesis and chorionic villus sampling Amniocentesis and CVS are invasive tests, because they involve invading a woman’s womb to take a sample of her baby’s amniotic fluid and developing placenta, respectively, to test for genetic abnormalities. Because of this, both tests carry risks to the baby and, to a lesser extent, to the mother. Amniocentesis is usually performed at 15 to 16 weeks. In amniocentesis, around 1 tablespoon (15ml) of the baby’s amniotic fluid is taken with a needle, under ultrasound guidance, and the baby’s cells, which are floating in the fluid, are removed and grown in the lab. The baby’s chromosomes, which are part of the nucleus of the cell, are tested for abnormalities, including Down syndrome. Results are usually available in about two weeks although new gene technologies (still too expensive for routine use) can reduce the waiting time to a few days. Amniotic fluid can also be tested for alpha fetoprotein (AFP), which indicates neural tube defects (NTDs), including spina bifida, in the baby’s brain and spinal cord. AFP is a simpler test, and results are usually available within a day or two. If AFP levels are high, a detailed ultrasound is recommended to give more information. Amniocentesis is recognised to cause miscarriage in between 1 in 50, and 1 in 200 babies overall, and this miscarriage can occur up to 3 weeks, or even later, after the procedure. More experienced operators tend to have lower miscarriage rates. One large study indicated that the risk of miscarriage might be higher among older women; among women who have experienced bleeding in the pregnancy and among women who have had more than 3 previous early miscarriages or abortions and/or a late miscarriage or abortion. In this study, women over 40 had a risk of miscarriage after amniocentesis of around 5%, while those over 40 who had also experienced bleeding had a 10% chance of miscarriage. Women over 40 with previous miscarriages or abortions, as above, had a 20% chance of miscarriage after the procedure. 12 Leakage of the amniotic fluid through the vagina (even though amniocentesis is performed through the mother’s abdomen) will occur for about 1 in 100 women. Although it is rare, the amniocentesis needle can scrape or even penetrate the baby. Several UK babies are reported to have developed severe brain damage after the needle mistakenly entered their skull, and in four of the five cases reported, this injury was not detected until after the birth. 13 Studies have suggested that newborn babies who have been exposed to amniocentesis and CVS may have impaired lung growth and development and babies born after early amniocentesis (10 to 13 weeks) are more likely to have breathing difficulties and to require intensive care treatment after birth. 14,15,16 A large European study has found that amniocentesis for prenatal diagnosis may increase the risk of premature birth, and the best medical evidence concludes that amniocentesis may also cause very low birth weight in around 1 in 200 babies. 17,18 Ironically, prematurity and very low birth weight are major risk factors for physical and intellectual impairment, including cerebral palsy. Amniocentesis is also invasive for the mother, involving penetration of her uterus. Possible complications include infection of the baby and fluid (chorioamnionitis), which will usually cause miscarriage. More severe infections can cause septic shock and serious illness. Worldwide, four women are known to have ever died from complications of amniocentesis. 19 CVS involves taking a sample of the baby’s developing placenta under ultrasound guidance, either via the mother’s abdomen or vagina, at around 11 to 12 weeks. CVS is a newer test and has extra risks, compared to amniocentesis. Firstly the miscarriage rate from the procedure is higher — between 1 in 25 and 1 in 100 overall. 20, 21 Difficulties with the procedure and/or with lab analysis are more common with CVS than with amniocentesis; occurring between 2.2 and 10% of procedures and a repeat CVS (or amniocentesis at a later time) may be necessary. 22 Repeated testing increases the risk of miscarriage. It is also possible that the cells removed by CVS are reported as normal when the baby actually has an unusual (and usually milder) ‘mosaic’ form of Down syndrome. Alternatively, the baby may be unaffected yet have mosaic cells on CVS. Mosaicism affects around 1% of CVS test results. 23 CVS was designed so that women could have this diagnostic test early in pregnancy, when a termination, if chosen, is more straightforward. However, the disadvantage of this earlier diagnosis is that some affected babies would have naturally miscarried within a few weeks. This is especially true for Down
syndrome babies, for whom 1 in 4 (25%) will miscarry between 10 and 14 weeks, and another 1 in 4 (23%) before the end of pregnancy. 24 CVS may also cause damage to the baby, probably because removal of a part of the baby’s placenta can interfere with blood supply to the baby’s body. Several studies have suggested that babies exposed to CVS before 10 weeks may have a small but increased risk of limb deformities, and other studies have noted increased numbers of CVS babies with clubfoot and malformations of the jaw and gut, as well as increased haemangiomas, or strawberry birth marks. 25 One small study has reported an increased risk of high blood pressure and pre-eclampsia (toxemia) later in the pregnancy when the baby’s placenta has been penetrated with CVS (which is the intent of the procedure) or amniocentesis. 26 Mothers who have an Rh-negative blood group should receive anti-D after amniocentesis or CVS to prevent blood incompatibility problems in future pregnancies. Another irony of both amniocentesis and CVS is that both procedures involve ultrasound, giving the mother What is the fundamental question one must ask of the world? I would think and posit many things, but the answer was always the same: Why is the child crying? Alice Walker Phone to order by credit card (02) 6684 4353 Or visit www.byronchild.com By cheque payable to Byron Publications, mail to Love & Violence CDRom, c/- byronchild magazine 7 Palm Ave, Mullumbimby NSW 2482 $5 discount for byronchild subscribers the opportunity to see her baby, yet at the same time she is expected to consider abortion. As one mother shared, ‘I was simply able to see her, reinforcing the love that they told me was for the wrong baby.’ 27 Brave new world Against these very quantitative analyses, Elkins and Brown (1995) argue ‘… individuals with Down syndrome have come to be recognised, over the last three decades, as bringing a valuable quality of life into our society. They are well known for the joy and love they bring to their families. 28 They remind us that the definitions of normalcy are artificial and fragile… In short, individuals with Down syndrome teach the rest of us how to cope, to grow, to overcome and to understand humility, gratitude and joy.’ In the research and published material about prenatal diagnosis, the perspectives of those affected by conditions such as Down syndrome have rarely been considered. Most of the prenatal diagnosis information leaflets, designed to help prospective parents decide about testing, paint a very negative and out- The Origins of Love & Violence James W. Prescott Ph.D This rare academic compilation CDrom introduces and documents over 30 years of brain/behaviour research on the impact of affectionate bonding, or its absence, on the developing brain. The program contains 45 minutes of rare research video footage, over 30 years of selected research publications and National Institute of Humanistic Science/National Institute of Health government documents.The film documentary is not available elsewhere and can be utilised in compelling presentations. Crucial material for • childbirth educators and early childhood and parent educators • medical and health professionals • midwives, birth attendants and doulas • social change activists • childcare providers and teachers • child and teen developmental professionals • childhood trauma therapists $55 inc post byronchild magazine, exclusive Australian distributor dated view of Down syndrome. 28,29 Alderson (2001) examines our presumptions about the value and quality of life with Down syndrome through her interviews with 5 affected adults. Her interviewees show insight and enjoyment of life; sensitivity to social prejudice; and painful awareness of the issues around testing and selective abortion for Down syndrome babies. There is more excellent and realistic literature written by parents, carers and individuals with Down syndrome on the internet, such as Cohen (1998); Kingsley and Levitz (1994); and Slater (2002). Diagnosis and counselling After so many decisions and tests, you might hope that the results from amniocentesis or CVS would be clear and the decision, whatever it is, would be straightforward. Unfortunately, this is often not the case. For all the babies with a straight diagnosis of Down syndrome, there are as many again with other chromosomal abnormalities, many of which carry an uncertain outcome. For example, around one third of abnormalities reported involve the sex chromosomes, which can give subtle or unknown levels www.violence.de www.ttfuture.org/prescott byronchild 19
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Page 5 and 6: Editor/Creative Director Kali Wendo
Page 7 and 8: At that age, experiences of loving
Page 9 and 10: Many structures seem to be created
Page 11 and 12: Circumcision Letters and Opinions I
Page 13 and 14: Once I met the mutilators and circu
Page 15 and 16: will grow to understand the importa
Page 17 and 18: Photo and artwork by Lisa Engeman .
Page 19: Down Syndrome: Is honest, accurate
Page 23 and 24: this degree of ‘false positive’
Page 25 and 26: 9. Biggio JR et al. An outcomes ana
Page 27 and 28: The Healing By Scott Noelle Embraci
Page 29 and 30: As we free ourselves from the shack
Page 31 and 32: positive effects are on the compete
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Page 35 and 36: A Breech Birth at Home By Tania A K
Page 37 and 38: Photo by Lisa Engeman Compiled by S
Page 39 and 40: that. He said that he would have lo
Page 41 and 42: Wayne’s Story As told to Suzanna
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