Current Paediatrics (2001) 11, 57d63 ^ 2001 Harcourt Publishers Ltd doi:10.1054/cupe.2000.0143, available online at http://www.idealibrary.com on Medical management of children with Down's syndrome E. Marder* and J. DennisR *Consultant Paediatrician, Community Child Health, Nottingham Community Health NHS Trust, St Ann's Health Centre, St Ann's Well Road, Nottingham NG3 3PX, UK RChairman, Down's Syndrome Medical Interest Group, 8 Polstead Road, Oxford, OX26TN, UK Down's syndrome, trisomy 21, is the commonest conditions were thought to be `part of the syndrome' autosomal trisomy, and the commonest identifiable and were left untreated. Today we hope that the health cause of learning disability. The natural prevalence is of children with Down's syndrome will be monitored as around 1/600 live births. Prenatal diagnosis and termina- carefully as that of any child so that their progress is not tion of some affected pregnancies has led to a current hampered by additional secondary but preventable incidence in the UK of around 0.9/1000 live births.1 handicap. Whilst wider availability and uptake of prenatal diagnosis This article covers all major and some less well known may decrease this further, a projected rise in maternal health problems. Inevitably it cannot be comprehensive, age may work in the opposite direction. It is difficult to and less common problems are merely listed in Box 1. predict how these factors will interact, but it is unlikely For further detail the reader is referred to `Further that incidence will reduce significantly in the near reading' listed below. future. Most people are familiar with the physical features of the syndrome and are aware that learning disability is THE PAEDIATRICIAN'S ROLE almost inevitable. A wide range of health problems are also recognized as being associated with Down's At time of diagnosis syndrome. However, many people, including health professionals, have a view of the disorder that is Usually, Down's syndrome will be suspected at birth or outdated and pessimistic. The stereotype is of a person in the newborn period. If the diagnosis is made with severe learning difficulties, who remains totally antenatally, the paediatrician may be an appropriate dependent throughout a life blighted by ill health, who is person to give information to the parents in order to likely to live in an institution, and to die in early adult help them reach a decision about continuing the life. The positive side given is that `they are all good- pregnancy. If the diagnosis is made at birth or later, the natured, affectionate and love music'. Like all paediatrician should be involved immediately in: stereotypes, some of these characteristics are true of some people with Down's syndrome. However, just like E Confirming the diagnosis the general population, there is enormous variability in E Giving information to the parents appearance, personality and ability. Some enjoy very E Medical assessment. good health. Some young adults are able to live semi- independently and to work. Some are less able, but A confident diagnosis can usually be made after nevertheless live fulfilling lives and make a contribution examining the baby, and although it must be confirmed to society. by chromosomal analysis, which most laboratories are Down's syndrome is a multi-system disorder, but the able to process in 48d72 h, in general, parents prefer to extent to which different systems are affected varies be given the news as soon as possible, and this should not © 2001 Harcourt Publishers Ltd. All rights reserved from person to person. In the past some treatable be delayed by waiting for test results. The importance of the time of disclosure and the way it is handled cannot be over-stressed.2d4 This initial contact will influence the parents' adjustment and also their subsequent working Correspondence to EM. relationships both with the paediatrician and with other To order bulk copies of this article, please contact - Jenni Welch Tel: +44 (0) 20 7424 4389, Fax: +44 (0) 20 7424 4433 Email: jenni_welch@harcourt.com 58 CURRENT PAEDIATRICS Box 1 Specific medical problems that occur more Box 2 The Down's Syndrome Association frequently in people with Down's syndrome The Down's Syndrome Association is a registered charity Cardiac funded mainly from voluntary donations. Services offered Congenital malformations include: Cor pulmonale E Immediate help, support and advice on all aspects Acquired valvular dysfunction of the syndrome Orthopaedic E Specialist advisors in the following areas: Cervical spine instability d medical Hip subluxation/dislocation d speech and language Patellar instability d legal Scoliosis d welfare rights Metatarsus varus Pes planus d education E Information leaflets and videos on a range of ENT topics suitable for parents, carers and Conductive hearing loss professionals, including a medical information Sensorineural hearing loss series Upper airway obstruction E Supporting research, including studentships Chronic catarrh Ophthalmic For further information contact Refractive errors Down's Syndrome Association Blepharitis 155 Mitcham Rd, London SW17 9PG Nasolacrimal obstruction email:info@downs-syndrome.org.uk Cataracts http://www.downs-syndrome.org.uk Glaucoma Nystagmus Squint Keratoconus doctors. It is essential that the paediatrician is well informed and able to offer up-to-date, factual informa- Gastrointestinal Congenital malformations tion on: Feeding difficulties E The aetiology of Down's syndrome Gastro-oesophageal reflux E Development of children with Down's syndrome Hirschprung's disease E Coeliac disease Immediate and future health concerns E Local resources Endocrine E Long-term prognosis. Growth retardation Hypothyroidism Parents should be given contact information for the Hyperthyroidism Down's Syndrome Association (Box 2). Some, but not Diabetes all, will appreciate being put in touch with another family Immunological with a child with Down's syndrome. Such introductions, Immunodeficiency however, should be arranged with care. Parents should Autoimmune diseases, e.g. arthropathy, vitiligo, alopecia be given a second opportunity to talk with the paediat- rician and ask questions within the first few days. They Haematological should leave hospital knowing when they will next be Transient neonatal myeloproliferative states seen, and who they can contact in the meantime should Leukaemia the need arise. The primary health care team should also Neonatal polycythaemia be informed of the diagnosis. Neonatal thrombocytopenia Dermatological Neonatal medical assessment Dry skin Folliculitis It is essential that every newborn with Down's syn- Vitiligo Alopecia drome has a comprehensive medical assessment. Major gastrointestinal malformations will declare themselves Neuropsychiatric clinically but evidence of cataract and congenital heart © 2001 Harcourt Publishers Ltd. All rights reserved Infantile spasms and other myoclonic epilepsies disease must be specifically sought. The latter may not be Autism evident on initial clinical examination and appropriate Depressive illness investigative screening and ongoing surveillance must be Dementia (adults only) initiated before discharge from hospital (see below). In districts where there is a neonatal auditory screening To order bulk copies of this article, please contact - Jenni Welch Tel: +44 (0) 20 7424 4389, Fax: +44 (0) 20 7424 4433 Email: jenni_welch@harcourt.com MEDICAL MANAGEMENT OF CHILDREN WITH DOWN'S SYNDROME 59 programme, babies with Down's syndrome should be specific medical problems, the paediatrician should en- included. sure that referral to appropriate adult specialists is made. Ongoing medical management All children with Down's syndrome should be offered SPECIFIC MEDICAL PROBLEMS regular medical review by a paediatrician throughout childhood. This may be a hospital, community, or devel- Cardiovascular problems opmental paediatrician depending on local service organ- Forty to sixty percent of babies with Down's syndrome ization. In some areas, services are centred in a specific have congenital heart disease. Of these, around 50% Down's syndrome clinic. Once children reach school age have an atrio-ventricular septal defect (AVSD). Other it may be most appropriate for their care to be abnormalities include Fallot's tetralogy and various com- coordinated by the school doctor. binations of ventricular and atrial septal defects. It is The paediatrician should review the child's health important to establish the cardiac status of all babies with and development and identify medical problems by the syndrome in the first few weeks of life, as irreversible a combination of history-taking, examination and screen- pulmonary vascular disease occurs earlier and more ing tests, all directed at problems more likely to occur frequently than in children without Down's syndrome. in Down's syndrome. A number of protocols and guide- Clinical examination alone is not sufficient. Some babies, lines have been drawn up suggesting appropriate pro- even those with significant defects, will have no signs or grammes.5d7 The table of health checks is taken from the symptoms in the first weeks of life.11 2nd edition of the parent-held child health record Assessment should ideally include an echocardiogram in (PCHR) insert for babies born with Down's syndrome8 the first few weeks. This should be carried out by an (see Table 1). It is based on the medical surveillance operator skilled in the diagnosis of such lesions. If echo- essentials for people with Down's syndrome developed by cardiography is not available, ECG, chest X-ray and exam- the UK Down's Syndrome Medical Interest Group. ination by an experienced paediatrician at birth and again The paediatrician will be just one of a number of health at 6 weeks should pick up nearly all significant defects. and non-health professionals working with the family. Babies with heart defects should be referred to Others likely to be involved include: a paediatric cardiologist for consideration of surgery as E Primary health care team early as possible. In the recent past, many children with E Other specialist doctors: cardiologist; ENT surgeon; Down's syndrome were not offered surgery. The com- ophthalmologist; orthopaedic surgeon, etc. plex nature of some of the abnormalities that occur in E Therapists: speech and language; physiotherapy; occu- Down's syndrome does mean that surgery may be difficult pational therapy. or impossible, and for some lesions operative morbidity E Social worker and mortality are high. Currently, however, the operative E Education: preschool teacher/portage worker; nursery survival for uncomplicated AVSD is around 90d95% in and school staff; educational psychologist. major centres in the UK. The decision as to whether or not to operate should be based on the nature of the heart The paediatrician will need to refer to these other condition, not the coexisting learning disability. specialists and may also have an important role in co- Children without congenital heart lesions can develop ordinating the team. heart disease at a later age. This may be secondary to upper airway obstruction (see below), or, in adolescence Transition to adult care or early adult life, the onset of primary valvular dysfunc- tion.12 The possibility of acquired heart disease should This is often a difficult area.6 After years of regular therefore be borne in mind at medical reviews, and paediatric supervision, there is no equivalent specialist echocardiogram in early adult life should be considered. service for adults. General practitioners are likely to be Parents and carers of all children with heart lesions best placed to provide the ongoing service, but may not should be given verbal and written information about have the specialist knowledge. Psychiatrists with a special infective carditis preventative measures. In potential risk interest in learning disability are primarily concerned situations, if cardiac status is unknown, preventive pro- with mental health and social adjustment, and may phylactic measures should be started. not look at other health care needs. The paediatrician can © 2001 Harcourt Publishers Ltd. All rights reserved help the process of transition prior to discharge Orthopaedic problems by providing the general practitioner, the carers and Cervical spine instability the young person with a comprehensive report of any medical problems, previous health care and sugges- Laxity of the transverse ligament of C1 or dysplasias of tions for ongoing care. Where the young person has C1/C2 can predispose to dislocation/subluxation of the To order bulk copies of this article, please contact - Jenni Welch Tel: +44 (0) 20 7424 4389, Fax: +44 (0) 20 7424 4433 Email: jenni_welch@harcourt.com 60 CURRENT PAEDIATRICS Table 1 Down's syndrome ! suggested schedule of health checks, taken from PCHR insert for babies with Down's syndrome (2nd edition).8 The following are suggested ages for health checks. Check at any other time if there are parental or other concerns Birth to 18 months 4`4 12 6 weeks 6`10 months 12 months to 2 1 years 3`3 1 years years 2 2 Thyroid blood Routine Thyroid blood Thyroid blood tests Guthrie test tests including tests including antibodies antibodies If your area has introduced fingerprick blood tests these should be done every year. Growth Length and weight should be checked Length and weight should be checked at least monitoring frequently and plotted on Down's syndrome annually and plotted on Down's syndrome growth charts. (see page 9 onwards). growth charts. Head circumference should be checked at each routine medical check. Eye check Visual Visual Visual Orthoptic Visual behaviour, behaviour, behaviour, examination, acuity, check for check for check for refraction refraction congenital squint squint and and cataract ophthalmic ophthalmic examination examination Hearing check Neonatal Full Full audiological review screening, if audiological (hearing, impedance, otoscopy) annually locally available review (hearing, impedance, otoscopy) Heart check Echocardio- Dental advice and other gram advice 0d6 weeks or chest X-ray & ECG at birth and 6 weeks From age 5 to 19 years Paediatric review Annually Hearing 2 yearly audiological review (as above) Vision/orthoptic check 2 yearly Thyroid blood tests At age 5 years, then either 2 yearly venous surveillance or annual fingerprick. atlantoaxial joint with potentially catastrophic sequelae. Down's syndrome do incur acute and sometimes cata- Previously, this led to recommendations for X-ray strophic damage to the cervical spinal cord.15 Risk of screening and selective restriction of sporting activities. injury from specific sporting activities seems minimal. It is now clear that there are no screening procedures Most dislocations occur in the course of everyday that predict those at risk; in particular, cervical spine activity, medical treatment or coincidentally whilst © 2001 Harcourt Publishers Ltd. All rights reserved X-rays are not informative. Both the Department of participating in sport. Neurological symptoms usually Health and the American Academy of Pediatrics have precede incidents of major trauma. withdrawn previous recommendations about radio- Current advice, therefore, is that radiological screen- logical screening.13,14 Although the risks may have been ing is not indicated and sporting activities should not overstated, there is no doubt that a few people with be restricted in those with no clinical signs. However, To order bulk copies of this article, please contact - Jenni Welch Tel: +44 (0) 20 7424 4389, Fax: +44 (0) 20 7424 4433 Email: jenni_welch@harcourt.com MEDICAL MANAGEMENT OF CHILDREN WITH DOWN'S SYNDROME 61 particular care should be taken when manipulating included. All should have audiological review between the head and neck of an unconscious child, e.g. during 6 and 10 months of age. This will usually need to be done anaesthesia or following a road traffic accident, and by a specialist audiology service, partly because many all carers and clinicians should be aware of warning signs. children will not be developmentally ready for routine These include: distraction testing at 7d8 months and also because more E detailed assessment including otoscopy and impedance Abnormal head posture E testing should be done. After this, preschool children Restricted neck movement E should have their hearing reviewed annually and older Neck pain E children at least biennially. Altered gait E Deteriorating manipulative skills E Deterioration in bladder or bowel control. Upper airway obstruction Any child with such symptoms should be referred to People with Down's syndrome are particularly prone to a specialist orthopaedic or neurosurgeon for further partial upper airway obstruction and obstructive sleep investigation. Treatment options include decompression apnoea.16 Narrow airways and tongue hypotonia are by traction and spinal fusion. common contributory factors. The condition may lead to growth retardation, poor developmental progress, tired- Other orthopaedic problems ness and lethargy. Significant hypoxia and cor pulmonale can result. Sleep disturbance, snoring, drooling and swal- Hypotonia, ligamentous laxity and skeletal dysplasias may lowing difficulties may be diagnostic pointers. Symptoms predispose to other orthopaedic problems. These are likely to worsen around age 2 or 3 as lymphoid tissue include patellar instability, scoliosis, subluxation/ becomes relatively large in a restricted pharyngeal space. dislocation of the hips, pes planus and metatarsus varus. Some children require adenotonsillectomy. The Intervention will be necessary if there is pain, limited paediatrician should consider the possibility of upper function or risk of structural damage. Surgery will some- airway obstruction in all children with Down's syndrome, times be necessary. Many children benefit from shoe and ask specific questions in history-taking. inserts and some may need specialist footwear. Catarrh Ear, nose and throat problems Many children with Down's syndrome have persistent Hearing mucopurulent nasal discharge. In addition to predisposing Over 50% of children with Down's syndrome have hear- to glue ear, this may make the child feel constantly below ing loss. This is most commonly due to glue ear, but par. It reduces social acceptability and may interfere with a minority have sensorineural deafness. The latter be- sleeping and eating. For children who are unable to comes more prevalent with age. The natural history of effectively blow their noses, mechanical decongesters glue ear differs from the general population. The condi- may help. Oral and nasal decongestants can be useful. tion often persists into adolescence and adult life. The Some children benefit from low dose, long-term anti- glue is unusually tenacious. The benefit of grommet biotics. Some improve markedly on a milk-free diet. operations may be short-lived and frequent repeats ne- cessary. Narrow ear canals make grommet insertion Ophthalmological problems more difficult. Grommets do have their place in manage- ment, but perhaps should not be the first treatment Ophthalmological problems, including congenital option. Medical management with long-term, low dose cataracts, nystagmus, squint, glaucoma, keratoconus, antibiotics or orally administered decongestants are of blepharitis and blocked nasolacrimal ducts, are over- unproven efficacy, but may be worth trying. For many represented in Down's syndrome.17 Refractive errors, children, the best option will be hearing aids. These are including hypermetropia, occur in approximately 70%, most likely to be accepted and useful if fitted by a special- and if uncorrected, constitute a significant cause of ist paediatric service, supported by specialist teachers for secondary handicap. The possibility of ophthalmic prob- hearing-impaired children. lems should be considered at every review, starting with As for all children, one of the most important factors the routine neonatal examination where a check should in managing hearing loss is the recognition that there is be made for congenital cataracts. After this, the paediat- a © 2001 Harcourt Publishers Ltd. All rights reserved problem. Unrecognized, it is a significant cause of rician should monitor visual behaviour by observation secondary handicap. All people with Down's syndrome and parental history. If any abnormality is suspected, the should have regular audiological surveillance throughout child should be referred to an ophthalmologist. Even life. In areas where there is a neonatal screening pro- where there are no concerns, referral for full ophthalmic gramme, children with Down's syndrome should be assessment, including refraction, fundoscopy and To order bulk copies of this article, please contact - Jenni Welch Tel: +44 (0) 20 7424 4389, Fax: +44 (0) 20 7424 4433 Email: jenni_welch@harcourt.com 62 CURRENT PAEDIATRICS orthoptic testing, should be made in the second year of syndrome. Diagnosis on clinical grounds is therefore not life. Vision should continue to be checked at least every reliable and biochemical screening is essential. In the UK, 2 years throughout life. This can be done by a school all babies are screened for hypothyroidism. For children nurse or high street optician once the child is develop- with Down's syndrome each district should have a policy mentally ready to cooperate with standard vision testing. for thyroid screening thereafter. This should include More serious ophthalmic problems such as glaucoma or either estimation of T4, TSH, and thyroid autoantibodies keratoconus will be picked up either because the child in venous blood at least every 2 years or annual dried has pain, red eye or because of changing vision. blood spot TSH measurement (Guthrie) using fingerprick blood.20 Transient changes in TFTs may oc- cur. Mildly raised TSH or the presence of autoantibodies Growth with normal T4 and no clinical evidence of hypothyroidism Short stature is a characteristic feature of Down's syn- does not usually warrant treatment. However, these drome. Mean adult height is 145 cm (48) for females children have a high risk of developing clinical disease and and 157 cm (411) for males. New centile charts for more frequent testing is essential. Though less common, Children with Down's syndrome based on data from the hyperthyroidism is also more frequently seen in Down's UK and Republic of Ireland are now available.18 Children syndrome. The paediatrician should always bear in mind with Down's syndrome do not generally suffer from the frequency of thyroid dysfunction and have a low classical growth hormone deficiency, and the cause of the threshold of suspicion at all times. growth retardation is not known. However, poor growth may be an indicator of congenital heart disease, Gastrointestinal problems upper airway obstruction, coeliac disease, hypothyro- idism, and other conditions that are more common Ten percent of children with Down's syndrome have in the syndrome. Children with Down's syndrome congenital malformations, including atresia of the should therefore be weighed and measured regularly, jejunum, duodenum, oesophagus and anus, annular pan- and measurements plotted on Down's specific charts. creas, and exomphalos. These may be picked up on Any significant deviation from these centiles should lead antenatal scan, or present in the neonatal period. There to detailed assessment. The Down's syndrome specific are less severe forms, e.g. anal or duodenal stenosis, charts, suggest that in older children with Down's syn- where symptoms are milder and may go unrecognized drome, obesity is the norm. However, obesity is not an for some time. Children with Down's syndrome should inevitable consequence of the syndrome. Weight for not be denied treatment for surgically correctable condi- height should be plotted on BMI charts (included on UK tions on the grounds that they have Down's syndrome. Down's Growth Charts). Excessive weight gain should Also more common in Down's syndrome are coeliac be thoroughly assessed and advice on exercise and disease (around 4%) and Hirschprung's disease (around nutrition offered where appropriate. 2%). It is important to consider these in the differential diagnosis of constipation, diarrhoea and poor growth. Many infants with Down's syndrome will have feeding Sexual development difficulties.21 This is often due to oral motor dysfunction, Parents often ask questions about sexual development. but gastro-oesophageal reflux is also common and can By and large this proceeds as in the general population, play a part. Appropriate management of these in infancy and most adolescents cope well with the demands of may prevent eating problems later on. puberty. There are, however, small variations. Some boys have small genitalia. Subfertility occurs in both sexes CONCLUSION but more so amongst men. There are many reports of women with Down's syndrome having children. There is Anyone undertaking a medical literature search on a 50:50 risk of Down's syndrome in a pregnancy where Down's syndrome will find that much current research one parent has the syndrome. focuses on prenatal diagnosis with the aim of terminating all affected pregnancies. Also, over the years, there have Thyroid dysfunction been numerous fashions involving unconventional treatments. Thus the main focus seems to be on what we Thyroid dysfunction, commonly hypothyroidism, is more cannot yet (or may not want to) do and on treatments of © 2001 Harcourt Publishers Ltd. All rights reserved prevalent in people with Down's syndrome at all ages.19 unproven efficacy. However, a great deal is known about The prevalence increases with age. Uncompensated a wide range of treatable medical problems that occur hypothyroidism is found in around 10% of the school age more frequently in people with Down's syndrome. At population. Signs and symptoms may not be obvious and present, the most significant benefit that medicine has to if present may be dismissed as being part of the offer children with Down's syndrome is to offer quality To order bulk copies of this article, please contact - Jenni Welch Tel: +44 (0) 20 7424 4389, Fax: +44 (0) 20 7424 4433 Email: jenni_welch@harcourt.com MEDICAL MANAGEMENT OF CHILDREN WITH DOWN'S SYNDROME 63 screening and assessment specific to their needs, and the 13. American Academy of Pediatrics, Committee on Sports Medicine same opportunities for medical treatment as the rest of and Fitness. Atlantoaxial instability in Down syndrome: subject the population. review. Pediatrics 1995; 96: 151d153. 14. Department of Health. Cervical spine instability in people with Down syndrome. CMOs Update 1995; 7: 4. ACKNOWLEDGEMENTS 15. Davidson R G. Atlantoaxial instability in individuals with Down syndrome: a fresh look at the evidence. Pediatrics 1988; 81: We acknowledge with gratitude the contribution of 857d865. 16. Stebbens V A, Dennis J, Samuels M P, Croft C B, Southall D P. Sleep member of the UK Down's Syndrome Medical Interest related upper airway obstruction in a cohort with Down's syn- Group-DSMIG UK whose ideas and advice have drome. Arch Dis Child 1991; 66: 1333d1338. influenced the contents of this article. 17. Roizen N J, Mets M B, Blondis T A. Ophthalmic disorders in children with Down syndrome. Dev Med Child Neurol 1994; 36: 594-600. REFERENCES 18. Down's Syndrome Medical Interest Group (2000) Downs syndrome growth charts. DSMIG UK (available from Harlow 1. Alberman E, Mutton D, Ide R, Nicholson A, Bobrow M. Down's Printing, NE33 4PU, UK). syndrome births and pregnancy terminations in 1989 to 1993: 19. Stewart B. The prevalence of unrecognised thyroid dysfunction in preliminary findings. Br J Obstet Gynaecol 1995; 102: 445 school age children with Down's syndrome in Oxfordshire. d447. 2. Newton R W, Newton J A. Management of Down's syndrome. In: In: Medical Issues in Down's syndrome. Proceedings of a medical David T J, ed. Recent advances in paediatrics 10. Edinburgh: conference. London: Down's Syndrome Association, 1994: Churchill Livingstone, 1992: 21 43 d35. d50. 3. Lingam S, Newton R. Right from the start. Paediatric practice 20. Noble S E, Leyland K, Findlay C A, Clark C E, Redfern J, Mackenzie guidelines. London: British Paediatric Association, 1996. U M, GuKrdwood RWA. Donaldson MC School based screening for 4. Cunningham C C, Morgan P A, McGucken R B. Down's syndrome: hypothyroidism in Down's syndrome by dried blood spot TSH is dissatisfaction with diagnosis inevitable? Dev Med Child Neurol measurement. Arch. Dis. Child. 2000; 82: 27d31. 1984; 26: 33 21. Spender Q, Stein A, Dennis J, Reilly S, Percy E, Cave D. An d39. 5. American Academy of Pediatrics Committee on Genetics. Health exploration of feeding difficulties in children with Down syndrome. Supervision for Children with Down Syndrome. Pediatrics 1994; Dev Med Child Neurol 1996; 38: 681d694. 93: 855d859. 6. Pueschel S M, Anneren G, Durlach R, Flores J, Sustrova M, Verma I C. Guidelines for optimal medical care of persons with Down FURTHER READING syndrome. Acta Paediatr 1995; 84: 823d827. 7. Cohen W I. Health care guidelines for individuals with Down Newton R. Down's syndrome: the practical handbook for parents and syndrome. Down Syndrome Quarterly 1996; 2: 1 carers. Vermillion, 1997. d10. 8. Down's Syndrome Medical Interest Group (2000) Insert for Per- Rogers P T, Coleman M. Medical care in Down syndrome: a preventa- sonal Child Health Record for babies born with Down's syndrome tive medicine approach. New York: Marcel Dekker, 1992. (2nd edition). DSMIG, UK (available from Harlow Printing, NE33 Selikowitz M. `Down Syndrome: The Facts' Oxford University Press. 4PU, UK) 1997. 9. Down's Syndrome Medical Interest Group (2000) Basic medical Van Dyke D C, Mattheis P, Schoon Eberly S, Williams J. Medical and surveillance essentials for people with Down's syndrome. DSMIG, surgical care for children with Down syndrome: A guide for UK (available from DSMIS, Children's Centre, City Hospital, parents. Bethesda: Woodbine House, 1995. Nottingham NG5 1PB, UK, www.dsmig.org.uk). 10. Howells G. Situations vacant: doctors required to provide care for people with learning disability. Br J Gen Pract 1996; 60 Additional resources: d61. 11. Tubman T R J, Shields M D, Craig B G, Mullholland H C, Nevin N C. Congenital heart disease in Down's syndrome: two year prospec- Down's Syndrome Medical Interest Group (DSMIG(UK)) and tive early screening study. BMJ 1991; 302: 1425 Down's Syndrome Medical Information Services (DSMIS) d1427. 12. Geggel R L, O'Brien J E, Feingold M. Development of valve Children's Centre, City Hospital Campus, Nottingham NG5 1PB dysfunction in adolescents and young adults with Down syndrome Tel 0115 9627658 ext 45667. Fax 0115 9627915. and no known congenital heart disease. J Pediatr 1993; 122: email: info@dsmig.org.uk 821 http://www.dsmig.org.uk d823. © 2001 Harcourt Publishers Ltd. All rights reserved To order bulk copies of this article, please contact - Jenni Welch Tel: +44 (0) 20 7424 4389, Fax: +44 (0) 20 7424 4433 Email: jenni_welch@harcourt.com