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Title:Lest we forget: prenatal and postnatal support - an ethical imperative for parents undergoing the new test for Down syndrome
It is without doubt that the new prenatal non-invasive test (PNIT) is a significant breakthrough - it can detect the presence of Down syndrome with greater accuracy and as a result will greatly reduce the number of 'healthy' foetuses being lost through invasive testing. In making the test available across the UK NHS [1] potentially means that more foetuses with Down syndrome would be detected. However this medical breakthrough, is not all good news, as the threat to the life of the unborn with Down syndrome clearly still remains. Regardless of the percentage of the number of pregnant women who are likely to go through the latter stage of testing ie amniocentesis and/or chorionic villus sampling [2], there is still a potential risk of a miscarriage. Indeed, whilst this threat of miscarriage has not gone away neither has the personal dilemma in whether to seeking out the diagnosis of the presence of Down syndrome or not. Broadly speaking there will be three different groups of patients in this likely scenario when the PNIT is rolled out nationally - pregnant women who have had the test and are found not to carry a foetus with Down syndrome; those who have had the test and are expecting a child with Down syndrome and the third group will be those who have opted for a termination after being informed of the presence of Down syndrome . However it is as yet, not clear as to whether there will be any new measures put in place to facilitate expectant parents to engage in a non-directive decision making process concerning their future unborn child.
It is pleasing to note that the preliminary reporting [2] makes reference to parents having time to prepare for the arrival of 'the affected baby', and while it is too early to know what this preparation would entail, it would be an opportune time to review current prenatal and postnatal care practices. This is especially pertinent concerning the need for balanced information about the condition for which the test is being carried out [3,4-5]. In the light of the new test, it is paramount that Health England sets out a national care strategy whereby the voice of parents with Down syndrome are heard. Indeed, a commitment to promote a positive experience for all parents involved can potentially be effected by constructing a care pathway designed to engage both staff and patients to address the significant bio-psychosocial issues which are manifest during the prenatal to postnatal periods especially where disability may be a factor within the pregnancy. As an example, there is little empirical evidence in the UK about new parents' experience of breastfeeding [6,7] , despite the wealth of evidence of the benefits of breast milk and on feeding issues among infants and young children with Down syndrome. As such a revised clinical care pathway would help in identifying and addressing the different challenging moments experienced by many parents, in a strategic and systematic way and with sensitivity. Thus a commitment to effect a more meaningful experience in such personal matters would be a fitting starting point toward improved health equality that lends credence to patients/parents' reproductive autonomy.
References
1.Mathew Limb. Blood test for Down’s syndrome is safe and effective,say researchers. BMJ 2015;350:h3126
2.Kmietowicz Z. Pregnant women support extra screening test for Down’s syndrome. BMJ 2014;349:g5830
3.Williams C,Alderson P,Farsides B. What constitutes ‘balanced information in the practitioners’ portrayal of Down’s syndrome? Midwifery 2002; 18: 230-237
4.Down's Syndrome Association (DSA) Tell it Right Survey, 2009, 2014 http://www.downs-syndrome.org.uk/policy-and-campaigns
5.Sooben RD. Antenatal testing and the subsequent birth of a child with Down syndrome: a phenomenological study of parents' experiences. JOID 2010, vol 14 , no. 2 , pp. 79-94 . , 10.1177/1744629510381944
6.Renfrew M, Dyson L, Wallace L, D’Souza L ,McCormick F and Spiby H. The effectiveness of public health interventions to promote the duration of breastfeeding - systematic review, 1st edition, May 2005 National Institution of Clinical Excellence. NICE. London
7. Sooben RD. Breastfeeding patterns in infants with Down's syndrome: A Literature review. British Journal of Midwifery. 2012. Vol 20, No 3.
Re: Blood test for Down’s syndrome is safe and effective, say researchers
Dear Editors,
Title:Lest we forget: prenatal and postnatal support - an ethical imperative for parents undergoing the new test for Down syndrome
It is without doubt that the new prenatal non-invasive test (PNIT) is a significant breakthrough - it can detect the presence of Down syndrome with greater accuracy and as a result will greatly reduce the number of 'healthy' foetuses being lost through invasive testing. In making the test available across the UK NHS [1] potentially means that more foetuses with Down syndrome would be detected. However this medical breakthrough, is not all good news, as the threat to the life of the unborn with Down syndrome clearly still remains. Regardless of the percentage of the number of pregnant women who are likely to go through the latter stage of testing ie amniocentesis and/or chorionic villus sampling [2], there is still a potential risk of a miscarriage. Indeed, whilst this threat of miscarriage has not gone away neither has the personal dilemma in whether to seeking out the diagnosis of the presence of Down syndrome or not. Broadly speaking there will be three different groups of patients in this likely scenario when the PNIT is rolled out nationally - pregnant women who have had the test and are found not to carry a foetus with Down syndrome; those who have had the test and are expecting a child with Down syndrome and the third group will be those who have opted for a termination after being informed of the presence of Down syndrome . However it is as yet, not clear as to whether there will be any new measures put in place to facilitate expectant parents to engage in a non-directive decision making process concerning their future unborn child.
It is pleasing to note that the preliminary reporting [2] makes reference to parents having time to prepare for the arrival of 'the affected baby', and while it is too early to know what this preparation would entail, it would be an opportune time to review current prenatal and postnatal care practices. This is especially pertinent concerning the need for balanced information about the condition for which the test is being carried out [3,4-5]. In the light of the new test, it is paramount that Health England sets out a national care strategy whereby the voice of parents with Down syndrome are heard. Indeed, a commitment to promote a positive experience for all parents involved can potentially be effected by constructing a care pathway designed to engage both staff and patients to address the significant bio-psychosocial issues which are manifest during the prenatal to postnatal periods especially where disability may be a factor within the pregnancy. As an example, there is little empirical evidence in the UK about new parents' experience of breastfeeding [6,7] , despite the wealth of evidence of the benefits of breast milk and on feeding issues among infants and young children with Down syndrome. As such a revised clinical care pathway would help in identifying and addressing the different challenging moments experienced by many parents, in a strategic and systematic way and with sensitivity. Thus a commitment to effect a more meaningful experience in such personal matters would be a fitting starting point toward improved health equality that lends credence to patients/parents' reproductive autonomy.
References
1.Mathew Limb. Blood test for Down’s syndrome is safe and effective,say researchers. BMJ 2015;350:h3126
2.Kmietowicz Z. Pregnant women support extra screening test for Down’s syndrome. BMJ 2014;349:g5830
3.Williams C,Alderson P,Farsides B. What constitutes ‘balanced information in the practitioners’ portrayal of Down’s syndrome? Midwifery 2002; 18: 230-237
4.Down's Syndrome Association (DSA) Tell it Right Survey, 2009, 2014 http://www.downs-syndrome.org.uk/policy-and-campaigns
5.Sooben RD. Antenatal testing and the subsequent birth of a child with Down syndrome: a phenomenological study of parents' experiences. JOID 2010, vol 14 , no. 2 , pp. 79-94 . , 10.1177/1744629510381944
6.Renfrew M, Dyson L, Wallace L, D’Souza L ,McCormick F and Spiby H. The effectiveness of public health interventions to promote the duration of breastfeeding - systematic review, 1st edition, May 2005 National Institution of Clinical Excellence. NICE. London
7. Sooben RD. Breastfeeding patterns in infants with Down's syndrome: A Literature review. British Journal of Midwifery. 2012. Vol 20, No 3.
r.d.sooben@herts.ac.uk
698 words
Competing interests: No competing interests