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Low vision and blindness in children with multiple handicaps
International Congress Series 1282 (2005) 397 – 401
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Low vision and blindness in children with multiple handicaps Maria Aparecida Onuki Haddada,*, Mayumi Seib, Keli Roberta Mariano Mateusc, Raquel Aleixoc, Marcos Wilson Sampaiod, Newton Kara-Jose´e a
University of Sa˜o Paulo Medical School Low Vision Service Ophthalmologist and Laramara Brazilian Association for Assistance to Visually impaired people Low Vision Service Coordinator, Brazil b Laramara Brazilian Association for Assistance to Visually impaired people Ophthalmologist, Brazil c Laramara Brazilian Association for Assistance to Visually impaired people orthoptist, Brazil d University of Sa˜o Paulo Medical School Low Vision Service Coordinator, Brazil e University of Sa˜o Paulo Medical School Ophthalmic Clinic Chairman, Brazil
Abstract. Objective: To identify causes of visual impairment in children with multiple disabilities (handicaps) evaluated at Laramara, Brazilian Association for Assistance to the Visually Impaired People from March 1998 to November 2003. Method: 1562 children were evaluated; mean age was 5 years, 49% were females and 51% males; 78% came from the city of Sa˜o Paulo, Brazil and 20.7% had moderate low vision, 19.2% severe and 9.7% profound low vision. 46.7% were in the near blindness range and 3.7% presented blindness. Data concerning diagnosis, site of the ocular lesion and causes of optic atrophy and cortical visual impairment were analyzed. Results: The main causes of visual impairment were: optic atrophy (37%), cortical visual impairment (22%), toxoplasmic macular retinochoroiditis (8.4%), retinopathy of prematurity (7.3%), ocular development abnormalities (6.7%) and congenital cataracts (6%). Optic nerve was the most frequently compromised ocular structure (38.4%). Concerning etiology of the optic atrophy, 47.6% were related to hipoxic–ishemic perinatal episodes and 13.9% to development abnormalities of the central nervous system. Cortical visual impairment was related to perinatal hipoxic–ischemic episodes in 46.9%. Conclusions: Necessity of primary intervention for infectious diseases and better prenatal care is stressed. Secondary prevention measures for detection and treatment of
* Corresponding author. Rua Apeninos 990 ap 81 CEP, 04104-020, Sa˜o Paulo, Brazil. Tel.: +55 11 5573 8560; fax: +55 11 5579 6314. E-mail address: [email protected] (M.A.O. Haddada). 0531-5131/ D 2005 Published by Elsevier B.V. doi:10.1016/j.ics.2005.05.207
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ocular and other problems as well as tertiary intervention and need of rehabilitation units for the multiple impaired are emphasized. D 2005 Published by Elsevier B.V. Keywords: Blindness; Multiple disability; Low vision; Optic atrophy; Visual cortical impairment
1. Introduction Visual impairment in early life, limiting the experiences and the accessibility to information, interferes in motor, cognitive and emotional development [1]. Etiological factors, age of onset, presence of other handicaps, environmental aspects and their interactions establish the difficulties and delay in child development [2]. The prevalence and causes of visual impairment in childhood are partially known according to geographic regions, research time, socioeconomic and cultural factors [3–5]. Gilbert and Foster estimate blindness prevalence in early life between 0.3/1000 and 1.0/ 1000, according to infantile mortality below 5 years of age rates [5,6]. In Brazil, the prevalence is considered 0.6/1000 children, according to data of the Brazilian Geography and Statistics Institute [7]. Multiple disabilities (MD), presence of two or more disabilities at the same individual, has its importance increased among population with visual impairment and its prevalence varies in the several studies and is higher in developing countries [4]. The record standard for childhood visual impairment data proposed by Gilbert, Foster and Negrel enables comparison among several studies in the world [8]. Data on blindness prevalence and blindness causes in Latin America are not well-known once they depend on population studies or records of cases, nonexistent in this region [9]. In Brazil, important studies have been contributing for identification of visual impairment causes [10–14]. The present study analyzes a children population with visual impairment associated to one or more disabilities evaluated at Ophthalmologic Low Vision Service of Brazilian Association for Assistance to the Visually Impaired People – Laramara, located in the city of Sa˜o Paulo, state of Sa˜o Paulo, Brazil. 2. Methods The authors evaluated a population of 3129 children, aged between 0 and 15 years, with visual impairment at the Ophthalmic Low Vision Service of Laramara from March 1998 to November 2003. 1567 (50.1%) patients only presented visual impairment and 1562 (49.9%) patients presented one or more disabilities associated to the visual impairment (MD— multiple disability). The MD population presented the following characteristics: (1) the mean age of 5.9 years, with values between 2 months and 15 years; (2) 765 (49%) patients were female and 797 (51%) male; (3) 78.2% of the patients were from the city of Sa˜o Paulo, 19.3% came from other cities of the state of Sa˜o Paulo and 2.5% from other Brazilian states; (4) the values of corrected visual acuity in the better eye, distributed in degrees of visual loss [15,16] were: moderate low vision 20.7%, severe low vision 19.2%, profound low vision 9.7%, near blindness 46.7% and blindness 3.7%; (5) 68% of the evaluated population
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presented physical disability, 25.2% cognitive difficulties, 4.5% hearing impairment and 9% presented global development delay. The authors studied data on the ophthalmic diagnosis, the anatomical site of the ocular lesion and the etiology of optic atrophy and cortical visual impairment.
3. Results The main causes of visual impairment were: optic atrophy (37%), cortical visual impairment (22%), bilateral macular retinochoroiditis due to congenital toxoplasmosis (8.4%), retinopathy of prematurity (7.3%), ocular malformations (6.7%), congenital cataracts (6%) and hereditary diseases of retina and macula (4.3%). Regarding the etiology of optic atrophy, it was observed: hereditary factors (3.6%), intrauterine factors (21.2%), perinatal factors (51.1%), postnatal factors (16%) and unknown (8.1%). Perinatal hypoxic disturbances (47.6%) and central nervous system malformations (13.9%) were detected. Cortical visual impairment was due to perinatal hypoxic events (46.9%), central nervous system malformations (11.7%) and meningitis (9.6%). The optic nerve was the most involved ocular structure (38.4%), followed by the retina (22.3%) and by lesions of the posterior optical pathways (22%).
4. Discussion The present study tries to contribute for better understanding of the causes of visual impairment in an infantile population with multiple disabilities evaluated in the city of Sa˜o Paulo, Brazil. In countries with easy access to health services, blindness prevalence for congenital or acquired causes has been decreasing; however, there is a great rate of children with low vision associated to neurological diseases due to the increase of extreme premature survival [17]. Cerebral damage increases the occurrence of cortical visual impairment and other associated disabilities [18]. At present study, 49.9% of the children had MD. This did not occur in other studies from other clinics in our country, in which there were no MD related cases [10–14]. The diagnosis of simultaneous disabilities is, frequently, difficult to establish: there is more attention on the most evident impairment and the ophthalmologic evaluation in children is complicated by their less effective communication and social interaction [2]. Blohme´ and Tornqvist [17] observed 25% of children with mental disability with optic atrophy and 40% with cortical visual impairment. Armitage [18] observed 34.9% of visual impaired children with neurosensorial deafness. At present study, we observe 68% of the population with physical disability, 25.2% with cognitive difficulties, 4.5% with hearing impairment and 9% with global delay of the development. Optic nerve atrophy and cortical visual impairment were the most frequent causes of visual impairment in the population with MD with 37% and 22%, respectively. In developed countries, these causes appear on increasing rates [5,17]. Isolating the cause of the optic atrophy and the cortical visual impairment is difficult, particularly in countries in development, where the medical records are not complete. At present study, we observe the hypoxic disturbances as the most frequent cause.
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Macular retinochoroiditis due to congenital toxoplasmosis was the third cause of visual impairment (8.4%). Studies observed it as a main cause of visual impairment in childhood in our country [10,12,13]. The retinopathy of prematurity was observed in 7.3%. The increased survival of the extreme premature due to technological advances, results in more frequent cases of ROP associated to neurological problems. Congenital cataract was observed in 6% (aphakia 3.7%, pseudophakia 0.1% and without surgical indication 2.2%). Literature data show congenital cataract as responsible for 5 to 20% of the cases of childhood blindness and not operated children are found in 10% of students in schools for blind children in developing countries [5]. Optic nerve (38.4%) was the anatomical structure more frequently affected at the present study. We observed corneal diseases in 0.9% of the cases, prevalence observed in the industrialized countries [4,7,9,14]. We can conclude that regarding the prevention of visual impairment in children with MD in our region, it should be necessary: (1) primary prevention for infectious diseases (like rubeolla and toxoplasmosis) and for prenatal and perinatal problems (with prenatal and delivery assistance); (2) secondary prevention, with detection and early treatment for ocular and other systemic problems and (3) tertiary prevention, with accessibility to rehabilitation services, specialized treatments and multidisciplinary attention to the population with multiple disabilities. References [1] G.T. Scholl, Growth and development, in: G.T. Scholl (Ed.), Foundations of Education is Blind and Visually Handicapped Children and Youth, American Foundation is Blind, New York, 1986, pp. 65 – 81. [2] S.U. Teplin, Visual impairment in infants and young children, Infants Young Child. 8 (1995) 18 – 51. [3] World Health Organization, Vision 2020: right have sight, World Health Organization, Geneve, 1999 (3 pp. Press Release WHO/12). [4] World Health Organization, Programme is Prevention of Blindness—Management of low vision in childrenReport of WHO Consultation, Bangkok, 1992 48 pp. (WHO/PBL/93.27). [5] A. Foster, C.E. Gilbert, Epidemiology of childhood blindness, Eye 6 (1992) 173 – 176. [6] C. Gilbert, A. Foster, Blindness in children: control priorities and research opportunities, Br. J. Ophthalmol. 85 (2001) 1025 – 1027. [7] Brazilian Institute of Geography and Statistics, Minimum Social indicators. Available at: http:// www.ibge.gov.br/home/estatistica/populacao/condicaodevida/indicadoresminimos. Accessed February 1, 2003. [8] C. Gilbert, A. Foster, A.D. Negrel, Childhood blindness: new form for recording causes of visual loss in children, Bull. World Health Organ. 71 (1993) 485 – 489. [9] B. Mun˜oz, S.K. West, Blindness and visual impairment in Americas and Caribbean, Br. J. Ophthalmol. 86 (2002) 498 – 504. [10] N. Kara-Jose´, et al., Estudo retrospectivo dos primeiros 140 casos atendidos na Clı´nica de Visa˜o Subnormal do Hospital das Clı´nicas da Unicamp, Arq. Bras. Oftalmol. 51 (1988) 6. [11] A.T.R. Moreira, J.R.C.A. Moreira, J. Arana, Causas de cegueira no Insituto de cegos do Parana´, Arq. Bras. Oftalmol. 54 (1991) 275. [12] K.M. Carvalho, et al., Characteristics of for pediatric low-vision population, J. Pediatr.Ophthalmol. Strabismus 35 (1996) 162 – 165. [13] M.A.O. Haddad, et al., Causes of visual impairment in childhood and adolescence: a retrospective study of 1917 cases, in: C. Stuen, The Arditi, A. Horowitz, M.A Lang (Eds.), Vision Rehabilitation—Assessment, Intervention and Outcomes, Swets and Zeitlinger, New York, 2000, pp. 371 – 375.
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[14] P.R. Brito, S. Veitzman, Causas de cegueira e baixa visa˜o, Arq. Bras. Oftalmol. 63 (1) (2000). [15] World Health Organization, International Classification of Diseases and Problems Related to Health-Tenth Revision, 1993 (Edusp). [16] A. Colenbrander, Standard Visual – Aspects and ranges of vision loss. International Council of Ophthalmology Report. Sydney, 2002. 33 pp. [17] J. Blohme´, K. Tornqvist, Visual impairment in Swedish children, Acta Ophthalmol. Scand. 75 (1997) 681 – 687. [18] I.A. Armitage, P. Burkej, J.T. Buffin, Visual impairment in severe and profound sensorineural deafness, Arch. Dis. Child. 73 (1995) 53 – 56.
www.ics-elsevier.com
Low vision and blindness in children with multiple handicaps Maria Aparecida Onuki Haddada,*, Mayumi Seib, Keli Roberta Mariano Mateusc, Raquel Aleixoc, Marcos Wilson Sampaiod, Newton Kara-Jose´e a
University of Sa˜o Paulo Medical School Low Vision Service Ophthalmologist and Laramara Brazilian Association for Assistance to Visually impaired people Low Vision Service Coordinator, Brazil b Laramara Brazilian Association for Assistance to Visually impaired people Ophthalmologist, Brazil c Laramara Brazilian Association for Assistance to Visually impaired people orthoptist, Brazil d University of Sa˜o Paulo Medical School Low Vision Service Coordinator, Brazil e University of Sa˜o Paulo Medical School Ophthalmic Clinic Chairman, Brazil
Abstract. Objective: To identify causes of visual impairment in children with multiple disabilities (handicaps) evaluated at Laramara, Brazilian Association for Assistance to the Visually Impaired People from March 1998 to November 2003. Method: 1562 children were evaluated; mean age was 5 years, 49% were females and 51% males; 78% came from the city of Sa˜o Paulo, Brazil and 20.7% had moderate low vision, 19.2% severe and 9.7% profound low vision. 46.7% were in the near blindness range and 3.7% presented blindness. Data concerning diagnosis, site of the ocular lesion and causes of optic atrophy and cortical visual impairment were analyzed. Results: The main causes of visual impairment were: optic atrophy (37%), cortical visual impairment (22%), toxoplasmic macular retinochoroiditis (8.4%), retinopathy of prematurity (7.3%), ocular development abnormalities (6.7%) and congenital cataracts (6%). Optic nerve was the most frequently compromised ocular structure (38.4%). Concerning etiology of the optic atrophy, 47.6% were related to hipoxic–ishemic perinatal episodes and 13.9% to development abnormalities of the central nervous system. Cortical visual impairment was related to perinatal hipoxic–ischemic episodes in 46.9%. Conclusions: Necessity of primary intervention for infectious diseases and better prenatal care is stressed. Secondary prevention measures for detection and treatment of
* Corresponding author. Rua Apeninos 990 ap 81 CEP, 04104-020, Sa˜o Paulo, Brazil. Tel.: +55 11 5573 8560; fax: +55 11 5579 6314. E-mail address: [email protected] (M.A.O. Haddada). 0531-5131/ D 2005 Published by Elsevier B.V. doi:10.1016/j.ics.2005.05.207
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M.A.O. Haddad et al. / International Congress Series 1282 (2005) 397–401
ocular and other problems as well as tertiary intervention and need of rehabilitation units for the multiple impaired are emphasized. D 2005 Published by Elsevier B.V. Keywords: Blindness; Multiple disability; Low vision; Optic atrophy; Visual cortical impairment
1. Introduction Visual impairment in early life, limiting the experiences and the accessibility to information, interferes in motor, cognitive and emotional development [1]. Etiological factors, age of onset, presence of other handicaps, environmental aspects and their interactions establish the difficulties and delay in child development [2]. The prevalence and causes of visual impairment in childhood are partially known according to geographic regions, research time, socioeconomic and cultural factors [3–5]. Gilbert and Foster estimate blindness prevalence in early life between 0.3/1000 and 1.0/ 1000, according to infantile mortality below 5 years of age rates [5,6]. In Brazil, the prevalence is considered 0.6/1000 children, according to data of the Brazilian Geography and Statistics Institute [7]. Multiple disabilities (MD), presence of two or more disabilities at the same individual, has its importance increased among population with visual impairment and its prevalence varies in the several studies and is higher in developing countries [4]. The record standard for childhood visual impairment data proposed by Gilbert, Foster and Negrel enables comparison among several studies in the world [8]. Data on blindness prevalence and blindness causes in Latin America are not well-known once they depend on population studies or records of cases, nonexistent in this region [9]. In Brazil, important studies have been contributing for identification of visual impairment causes [10–14]. The present study analyzes a children population with visual impairment associated to one or more disabilities evaluated at Ophthalmologic Low Vision Service of Brazilian Association for Assistance to the Visually Impaired People – Laramara, located in the city of Sa˜o Paulo, state of Sa˜o Paulo, Brazil. 2. Methods The authors evaluated a population of 3129 children, aged between 0 and 15 years, with visual impairment at the Ophthalmic Low Vision Service of Laramara from March 1998 to November 2003. 1567 (50.1%) patients only presented visual impairment and 1562 (49.9%) patients presented one or more disabilities associated to the visual impairment (MD— multiple disability). The MD population presented the following characteristics: (1) the mean age of 5.9 years, with values between 2 months and 15 years; (2) 765 (49%) patients were female and 797 (51%) male; (3) 78.2% of the patients were from the city of Sa˜o Paulo, 19.3% came from other cities of the state of Sa˜o Paulo and 2.5% from other Brazilian states; (4) the values of corrected visual acuity in the better eye, distributed in degrees of visual loss [15,16] were: moderate low vision 20.7%, severe low vision 19.2%, profound low vision 9.7%, near blindness 46.7% and blindness 3.7%; (5) 68% of the evaluated population
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presented physical disability, 25.2% cognitive difficulties, 4.5% hearing impairment and 9% presented global development delay. The authors studied data on the ophthalmic diagnosis, the anatomical site of the ocular lesion and the etiology of optic atrophy and cortical visual impairment.
3. Results The main causes of visual impairment were: optic atrophy (37%), cortical visual impairment (22%), bilateral macular retinochoroiditis due to congenital toxoplasmosis (8.4%), retinopathy of prematurity (7.3%), ocular malformations (6.7%), congenital cataracts (6%) and hereditary diseases of retina and macula (4.3%). Regarding the etiology of optic atrophy, it was observed: hereditary factors (3.6%), intrauterine factors (21.2%), perinatal factors (51.1%), postnatal factors (16%) and unknown (8.1%). Perinatal hypoxic disturbances (47.6%) and central nervous system malformations (13.9%) were detected. Cortical visual impairment was due to perinatal hypoxic events (46.9%), central nervous system malformations (11.7%) and meningitis (9.6%). The optic nerve was the most involved ocular structure (38.4%), followed by the retina (22.3%) and by lesions of the posterior optical pathways (22%).
4. Discussion The present study tries to contribute for better understanding of the causes of visual impairment in an infantile population with multiple disabilities evaluated in the city of Sa˜o Paulo, Brazil. In countries with easy access to health services, blindness prevalence for congenital or acquired causes has been decreasing; however, there is a great rate of children with low vision associated to neurological diseases due to the increase of extreme premature survival [17]. Cerebral damage increases the occurrence of cortical visual impairment and other associated disabilities [18]. At present study, 49.9% of the children had MD. This did not occur in other studies from other clinics in our country, in which there were no MD related cases [10–14]. The diagnosis of simultaneous disabilities is, frequently, difficult to establish: there is more attention on the most evident impairment and the ophthalmologic evaluation in children is complicated by their less effective communication and social interaction [2]. Blohme´ and Tornqvist [17] observed 25% of children with mental disability with optic atrophy and 40% with cortical visual impairment. Armitage [18] observed 34.9% of visual impaired children with neurosensorial deafness. At present study, we observe 68% of the population with physical disability, 25.2% with cognitive difficulties, 4.5% with hearing impairment and 9% with global delay of the development. Optic nerve atrophy and cortical visual impairment were the most frequent causes of visual impairment in the population with MD with 37% and 22%, respectively. In developed countries, these causes appear on increasing rates [5,17]. Isolating the cause of the optic atrophy and the cortical visual impairment is difficult, particularly in countries in development, where the medical records are not complete. At present study, we observe the hypoxic disturbances as the most frequent cause.
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Macular retinochoroiditis due to congenital toxoplasmosis was the third cause of visual impairment (8.4%). Studies observed it as a main cause of visual impairment in childhood in our country [10,12,13]. The retinopathy of prematurity was observed in 7.3%. The increased survival of the extreme premature due to technological advances, results in more frequent cases of ROP associated to neurological problems. Congenital cataract was observed in 6% (aphakia 3.7%, pseudophakia 0.1% and without surgical indication 2.2%). Literature data show congenital cataract as responsible for 5 to 20% of the cases of childhood blindness and not operated children are found in 10% of students in schools for blind children in developing countries [5]. Optic nerve (38.4%) was the anatomical structure more frequently affected at the present study. We observed corneal diseases in 0.9% of the cases, prevalence observed in the industrialized countries [4,7,9,14]. We can conclude that regarding the prevention of visual impairment in children with MD in our region, it should be necessary: (1) primary prevention for infectious diseases (like rubeolla and toxoplasmosis) and for prenatal and perinatal problems (with prenatal and delivery assistance); (2) secondary prevention, with detection and early treatment for ocular and other systemic problems and (3) tertiary prevention, with accessibility to rehabilitation services, specialized treatments and multidisciplinary attention to the population with multiple disabilities. References [1] G.T. Scholl, Growth and development, in: G.T. Scholl (Ed.), Foundations of Education is Blind and Visually Handicapped Children and Youth, American Foundation is Blind, New York, 1986, pp. 65 – 81. [2] S.U. Teplin, Visual impairment in infants and young children, Infants Young Child. 8 (1995) 18 – 51. [3] World Health Organization, Vision 2020: right have sight, World Health Organization, Geneve, 1999 (3 pp. Press Release WHO/12). [4] World Health Organization, Programme is Prevention of Blindness—Management of low vision in childrenReport of WHO Consultation, Bangkok, 1992 48 pp. (WHO/PBL/93.27). [5] A. Foster, C.E. Gilbert, Epidemiology of childhood blindness, Eye 6 (1992) 173 – 176. [6] C. Gilbert, A. Foster, Blindness in children: control priorities and research opportunities, Br. J. Ophthalmol. 85 (2001) 1025 – 1027. [7] Brazilian Institute of Geography and Statistics, Minimum Social indicators. Available at: http:// www.ibge.gov.br/home/estatistica/populacao/condicaodevida/indicadoresminimos. Accessed February 1, 2003. [8] C. Gilbert, A. Foster, A.D. Negrel, Childhood blindness: new form for recording causes of visual loss in children, Bull. World Health Organ. 71 (1993) 485 – 489. [9] B. Mun˜oz, S.K. West, Blindness and visual impairment in Americas and Caribbean, Br. J. Ophthalmol. 86 (2002) 498 – 504. [10] N. Kara-Jose´, et al., Estudo retrospectivo dos primeiros 140 casos atendidos na Clı´nica de Visa˜o Subnormal do Hospital das Clı´nicas da Unicamp, Arq. Bras. Oftalmol. 51 (1988) 6. [11] A.T.R. Moreira, J.R.C.A. Moreira, J. Arana, Causas de cegueira no Insituto de cegos do Parana´, Arq. Bras. Oftalmol. 54 (1991) 275. [12] K.M. Carvalho, et al., Characteristics of for pediatric low-vision population, J. Pediatr.Ophthalmol. Strabismus 35 (1996) 162 – 165. [13] M.A.O. Haddad, et al., Causes of visual impairment in childhood and adolescence: a retrospective study of 1917 cases, in: C. Stuen, The Arditi, A. Horowitz, M.A Lang (Eds.), Vision Rehabilitation—Assessment, Intervention and Outcomes, Swets and Zeitlinger, New York, 2000, pp. 371 – 375.
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[14] P.R. Brito, S. Veitzman, Causas de cegueira e baixa visa˜o, Arq. Bras. Oftalmol. 63 (1) (2000). [15] World Health Organization, International Classification of Diseases and Problems Related to Health-Tenth Revision, 1993 (Edusp). [16] A. Colenbrander, Standard Visual – Aspects and ranges of vision loss. International Council of Ophthalmology Report. Sydney, 2002. 33 pp. [17] J. Blohme´, K. Tornqvist, Visual impairment in Swedish children, Acta Ophthalmol. Scand. 75 (1997) 681 – 687. [18] I.A. Armitage, P. Burkej, J.T. Buffin, Visual impairment in severe and profound sensorineural deafness, Arch. Dis. Child. 73 (1995) 53 – 56.