ChMedical Care of Infants with Down Syndrome in Sub-Sahara Africa; Challenges and the Way Forwardallenges In Managing Children With Down Syndrome In Sub-Saharan Africa; And The Way Forward
Main Article Content
Abstract
Down syndrome is the most common chromosomal malformation, it affects multiple organs, necessitating a need for medical care for different systems. The care needed by infants with Down syndrome is complex and needs planning and coordination at different levels.
Medical services in Sub-Saharan Africa are not robust and face challenges in providing accessible and affordable health care.
We will review the situation of the medical care provided to infants with Down Syndrome, looking at diagnosis, counselling, and management within the Sub-Saharan context. Exploring the challenges and suggesting recommendations.
Article Details
How to Cite
ELSHAZALI, O H; ABDULLAHI, H.
ChMedical Care of Infants with Down Syndrome in Sub-Sahara Africa; Challenges and the Way Forwardallenges In Managing Children With Down Syndrome In Sub-Saharan Africa; And The Way Forward.
Medical Research Archives, [S.l.], v. 10, n. 10, oct. 2022.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/3215>. Date accessed: 22 dec. 2024.
doi: https://doi.org/10.18103/mra.v10i10.3215.
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
1. Bull M. Down Syndrome. New England Journal of Medicine. 2020;382(24):2344-2352.
2. Roizen N, Patterson D. Down’s syndrome. Lancet. 2003;361(9365):1281-1289. doi:10.1016/S0140- 6736(03)12987-X
3. Moosa S, Segal D, Christianson, AL Gregersen N. Thyroid dysfunction in a cohort of South African children with Down syndrome. S Afr Med J. 2013;103(12):966-970. doi:10.7196/SAMJ.7111
4. Willoughby M, Aldous C, Patrick M, Kavonic S, A C. Delay and poor diagnosis of Down syndrome in KwaZulu-Natal, South Africa: A retrospective review of postnatal cytogenetic testing. South African Medical Journal. 2016;106(6):626-629.
5. Lagan N, Huggard D, Mc Grane F, et al. Multiorgan involvement and management in children with Down syndrome. Acta Paediatrica. 2020;109(6):1096-1111.
6. Elshazali O, Ibrahim M, Elseed A. Management of Congenital Heart Disease in Low-Income Countries: The Challenges and the Way Forward. In: Rao S, ed. Congenital Heart Defects - Recent Advances. London: IntechOpen; 2022. www.intechopen.com/online-first/8160.
7. Weijerman M, de Winter J. Clinical practice. The care of children with Down syndrome. European Journal of Pediatrics. 2010;169(12):1445-1452.
8. Oloyede OA. Down Syndrome in Nigeria Sub Saharan Africa. In: Dey S, ed. Prenatal Diagnosis and Screening for Down Syndrome. London: IntechOpen; 2011. doi:10.5772/18730
9. Luder J, Musoke L. Mongolism in africans. Archives of Disease in Childhood. 1055;30(152):310-315.
10. Adeyokunnu A. The incidence of Down’s syndrome in Nigeria. Journal of Medical Genetics. 1982;19:277-279.
11. Molteno C, Smart R, Viljoen D, Sayed R, Roux A. Twenty-year birth prevalence of Down syndrome in Cape Town, South Africa. Paediatric and Perinatal Epidemiology. 1997;11:428-435.
12. Bu Q, Qiang R, Cheng H, Wang A, Chen H, Pan Z. Analysis of the Global Disease Burden of Down Syndrome Using YLDs, YLLs, and DALYs Based on the Global Burden of Disease 2019 Data. Front Pediatr. 2022;10. doi:10.3389/fped.2022.882722
13. Christianson A. Down syndrome in black South African infants and children – clinical features and delayed diagnosis. S Afr Med J. 1997;87(8):992-995.
14. Weijerman M, van Furth A, Vonk Noordegraaf A, van Wouwe J, Broers C, Gemke R. Prevalence, neonatal characteristics, and first-year mortality of Down syndrome: A national study. J Pediatr. 2008;152(1):15-19. doi:10.1016/j.jpeds.2007.09.045
15. Achila BO, Stones W. Prenatal screening for Down syndrome: a survey of health care professionals’ opinions and practice. journal of Obstetrics and Gynaecology of Eastern and Central Africa. 2013;25(1):19-22.
16. Mwewa D, Michelo C. Factors associated with home deliveries in a low income rural setting-observations from Nchelenge district, Zambia. Medical Journal of Zambia. 2010;37(4):234-239.
17. Urban M, Stewart C, Ruppelt T, Geerts I. Effectiveness of prenatal screening for Down syndrome on the basis of maternal age in Cape Town. South African Medical Journa. 2011;10(1). doi:10.7196/SAMJ.4188
18. Nicolaides K., Azar G, Byme D, Mansur C, Marks K. Fetal nuchal translucency ultrasound screening for chromosomal defects in first trimestrer of pregnancy. British Medical Journal. 1992;304:867-869.
19. Elshazali osama H, Abdullahi H, Osman HES. Assessment of quality of counselling for down syndrome in Sudan. Journal of Pediatrics and Neonatal Care. 2018;8(5):232-234. doi:10.15406/jpnc.2018.08.00347
20. ELShazali OH, Abdullahi H. Counselling for Down Syndrome, are We Doing it Right? Recent Developments in Medicine and Medical Research. 2021;7:58-63.
21. Muggli EE, Collins VR, Marraffa C. Going down a different road: first support and information needs of families with a baby with Down syndrome. Medical Journal of Australia. 2009;190(2):58-61.
22. Abdelmoktader A, Abd Elhamed K. Egyptian mothers’ preferences regarding how physicians break bad news about their child’s disability: a structured verbal questionnaire. BMC Med Ethics. 2012;2:13-14. doi:10.1186/1472-6939-13-14
23. Urban M, Stewart C, Ruppelt T, Geerts L. Effectiveness of prenatal screening for Down syndrome on the basis of maternal age in Cape Town. S Afr Med J. 2011;101(1):45-48.
24. Sheets KB, Crissman BG, Feist CD, et al. Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors. J Genet Counsel. 2011;20:432-441. doi:10.1007/s10897-011-9375-8
25. Skotko B., Capone G., Kishnani P. Postnatal diagnosis of Down syndrome: synthesis of the evidence on how best to deliver the news. Pediatrics. 2009;124(4):e751-e758. doi:10.1542/peds.2009-0480
26. Skotko B. Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics. 2005;115(1):64-77.
27. Kleinert H, Lunney C, Campbell L, Ferguson II J. Improving residents’ understanding of issues, comfort levels, and patient needs regarding screening for and diagnosing Down syndrome. American journal of obstetrics and gynecology. 2009;201(3):328-e1.
28. Lunney C, Kleinert H, Ferguson JE 2nd Campbell L. Effectively training pediatric residents to deliver diagnoses of Down syndrome. Am J Med Genet A. 2012;158A(2):384-390.
29. Urban M, Stewart C, Ruppelt T, Geerts L. Effectiveness of prenatal screening for Down syndrome on the basis of maternal age in Cape Town. S Afr Med J. 2011;101(1):45-48.
30. Christianson A. Down syndrome in sub-Saharan Africa. J Med Genet. 1996;33:89-92.
31. Bull M., Committee on Genetics. Health supervision for children with Down syndrome. Pediatrics. 2011;128(2):393-406.
32. Schoonraad L, Slogrove A, Engelbrecht A, Urban MF. A 5-Year Retrospective Review of the Health Supervision Received by Children with Down Syndrome at a South African Regional Hospital. Journal of Tropical Pediatrics. 2020;66:441-447. doi:org/10.1093/tropej/fmz087
33. Sidze E., Wekesah F., Kisia L, Abajobir A. Inequalities in Access and Utilization of Maternal, Newborn and Child Health Services in sub-Saharan Africa: A Special Focus on Urban Settings. Matern Child Health. 2022;26:250-279. doi:org/10.1007/s10995-021-03250-z
34. Bull M. Improvement of Outcomes for Children with Down Syndrome. Journal of Pediatrics. 2018;193:9-10. doi:org/10.1016/j.jpeds.2017.11.014
35. Skotko B, Davidson E, Weintraub G. Contributions of a specialty clinic for children and adolescents with Down syndrome. Am J Med Genet. 213AD;161(3):430-437.
2. Roizen N, Patterson D. Down’s syndrome. Lancet. 2003;361(9365):1281-1289. doi:10.1016/S0140- 6736(03)12987-X
3. Moosa S, Segal D, Christianson, AL Gregersen N. Thyroid dysfunction in a cohort of South African children with Down syndrome. S Afr Med J. 2013;103(12):966-970. doi:10.7196/SAMJ.7111
4. Willoughby M, Aldous C, Patrick M, Kavonic S, A C. Delay and poor diagnosis of Down syndrome in KwaZulu-Natal, South Africa: A retrospective review of postnatal cytogenetic testing. South African Medical Journal. 2016;106(6):626-629.
5. Lagan N, Huggard D, Mc Grane F, et al. Multiorgan involvement and management in children with Down syndrome. Acta Paediatrica. 2020;109(6):1096-1111.
6. Elshazali O, Ibrahim M, Elseed A. Management of Congenital Heart Disease in Low-Income Countries: The Challenges and the Way Forward. In: Rao S, ed. Congenital Heart Defects - Recent Advances. London: IntechOpen; 2022. www.intechopen.com/online-first/8160.
7. Weijerman M, de Winter J. Clinical practice. The care of children with Down syndrome. European Journal of Pediatrics. 2010;169(12):1445-1452.
8. Oloyede OA. Down Syndrome in Nigeria Sub Saharan Africa. In: Dey S, ed. Prenatal Diagnosis and Screening for Down Syndrome. London: IntechOpen; 2011. doi:10.5772/18730
9. Luder J, Musoke L. Mongolism in africans. Archives of Disease in Childhood. 1055;30(152):310-315.
10. Adeyokunnu A. The incidence of Down’s syndrome in Nigeria. Journal of Medical Genetics. 1982;19:277-279.
11. Molteno C, Smart R, Viljoen D, Sayed R, Roux A. Twenty-year birth prevalence of Down syndrome in Cape Town, South Africa. Paediatric and Perinatal Epidemiology. 1997;11:428-435.
12. Bu Q, Qiang R, Cheng H, Wang A, Chen H, Pan Z. Analysis of the Global Disease Burden of Down Syndrome Using YLDs, YLLs, and DALYs Based on the Global Burden of Disease 2019 Data. Front Pediatr. 2022;10. doi:10.3389/fped.2022.882722
13. Christianson A. Down syndrome in black South African infants and children – clinical features and delayed diagnosis. S Afr Med J. 1997;87(8):992-995.
14. Weijerman M, van Furth A, Vonk Noordegraaf A, van Wouwe J, Broers C, Gemke R. Prevalence, neonatal characteristics, and first-year mortality of Down syndrome: A national study. J Pediatr. 2008;152(1):15-19. doi:10.1016/j.jpeds.2007.09.045
15. Achila BO, Stones W. Prenatal screening for Down syndrome: a survey of health care professionals’ opinions and practice. journal of Obstetrics and Gynaecology of Eastern and Central Africa. 2013;25(1):19-22.
16. Mwewa D, Michelo C. Factors associated with home deliveries in a low income rural setting-observations from Nchelenge district, Zambia. Medical Journal of Zambia. 2010;37(4):234-239.
17. Urban M, Stewart C, Ruppelt T, Geerts I. Effectiveness of prenatal screening for Down syndrome on the basis of maternal age in Cape Town. South African Medical Journa. 2011;10(1). doi:10.7196/SAMJ.4188
18. Nicolaides K., Azar G, Byme D, Mansur C, Marks K. Fetal nuchal translucency ultrasound screening for chromosomal defects in first trimestrer of pregnancy. British Medical Journal. 1992;304:867-869.
19. Elshazali osama H, Abdullahi H, Osman HES. Assessment of quality of counselling for down syndrome in Sudan. Journal of Pediatrics and Neonatal Care. 2018;8(5):232-234. doi:10.15406/jpnc.2018.08.00347
20. ELShazali OH, Abdullahi H. Counselling for Down Syndrome, are We Doing it Right? Recent Developments in Medicine and Medical Research. 2021;7:58-63.
21. Muggli EE, Collins VR, Marraffa C. Going down a different road: first support and information needs of families with a baby with Down syndrome. Medical Journal of Australia. 2009;190(2):58-61.
22. Abdelmoktader A, Abd Elhamed K. Egyptian mothers’ preferences regarding how physicians break bad news about their child’s disability: a structured verbal questionnaire. BMC Med Ethics. 2012;2:13-14. doi:10.1186/1472-6939-13-14
23. Urban M, Stewart C, Ruppelt T, Geerts L. Effectiveness of prenatal screening for Down syndrome on the basis of maternal age in Cape Town. S Afr Med J. 2011;101(1):45-48.
24. Sheets KB, Crissman BG, Feist CD, et al. Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors. J Genet Counsel. 2011;20:432-441. doi:10.1007/s10897-011-9375-8
25. Skotko B., Capone G., Kishnani P. Postnatal diagnosis of Down syndrome: synthesis of the evidence on how best to deliver the news. Pediatrics. 2009;124(4):e751-e758. doi:10.1542/peds.2009-0480
26. Skotko B. Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics. 2005;115(1):64-77.
27. Kleinert H, Lunney C, Campbell L, Ferguson II J. Improving residents’ understanding of issues, comfort levels, and patient needs regarding screening for and diagnosing Down syndrome. American journal of obstetrics and gynecology. 2009;201(3):328-e1.
28. Lunney C, Kleinert H, Ferguson JE 2nd Campbell L. Effectively training pediatric residents to deliver diagnoses of Down syndrome. Am J Med Genet A. 2012;158A(2):384-390.
29. Urban M, Stewart C, Ruppelt T, Geerts L. Effectiveness of prenatal screening for Down syndrome on the basis of maternal age in Cape Town. S Afr Med J. 2011;101(1):45-48.
30. Christianson A. Down syndrome in sub-Saharan Africa. J Med Genet. 1996;33:89-92.
31. Bull M., Committee on Genetics. Health supervision for children with Down syndrome. Pediatrics. 2011;128(2):393-406.
32. Schoonraad L, Slogrove A, Engelbrecht A, Urban MF. A 5-Year Retrospective Review of the Health Supervision Received by Children with Down Syndrome at a South African Regional Hospital. Journal of Tropical Pediatrics. 2020;66:441-447. doi:org/10.1093/tropej/fmz087
33. Sidze E., Wekesah F., Kisia L, Abajobir A. Inequalities in Access and Utilization of Maternal, Newborn and Child Health Services in sub-Saharan Africa: A Special Focus on Urban Settings. Matern Child Health. 2022;26:250-279. doi:org/10.1007/s10995-021-03250-z
34. Bull M. Improvement of Outcomes for Children with Down Syndrome. Journal of Pediatrics. 2018;193:9-10. doi:org/10.1016/j.jpeds.2017.11.014
35. Skotko B, Davidson E, Weintraub G. Contributions of a specialty clinic for children and adolescents with Down syndrome. Am J Med Genet. 213AD;161(3):430-437.