KEY FACTS FROM THE DOWN'S HEART GROUP
Down's Heart Group (UK)

• In every 700 babies born, there is likely to be one with Down's Syndrome.
  
• About 40% of the babies born with Down's Syndrome will have a heart problem.
  
• The whole range of heart problems may be found in these children. Some are mild but they are more commonly of a serious nature.
  
• Most experts are now convinced that children with Down's Syndrome are more prone to pulmonary hypertension / pulmonary vascular disease than children who do not have Down's Syndrome
  
• Many children with Down's Syndrome, even those with severe heart problems, now attend local, 'integrated' schools and lead full and quite active lives. As children with Down's Syndrome are not, in general, noted for their athletic or competitive natures and so may be less frustrated than other children by the physical limitations which their heart conditions may impose.
  
• Parents of children with Down's Syndrome face the same worries as other parents when their child is diagnosed with heart problems, but they may also worry about 'discrimination' in the treatment of their child. Many question the motives of hospitals in recommending or advising against surgery.
  
• Severe early feeding difficulties can be a very major problem for these children. With patience and perseverance breast-feeding can usually succeed nevertheless.
  
• Many of the early symptoms of a major heart problem, e.g. inadequate weight gain and lack of energy, may be mistaken by parents and professionals for symptoms of Down's Syndrome itself. Thus, late diagnosis is common.
  
• Although it is only very rarely found in children who do not have Down's Syndrome, the most common problem in children with Down's Syndrome is the Atrio Ventricular Canal defect (an AVSD often with a common AV valve). This serious defect affects the centre of the heart and is often murmur-free, thus adding to the likelihood of late diagnosis.
  
• The most common sort of cyanotic problem in children with Down's Syndrome is Tetralogy of Fallot. This is often found in combination with the AV Canal defect.
  
• Many parents fear that the heart problem will eclipse their child's mental ability, and this may lead to unrealistic hopes of mental improvement after surgery.
  
• As with children who do not have Down's Syndrome, bouts of illness and hospitalisation can cause temporary delays, even setbacks, in development, but no direct link between mental ability and a heart condition is to be expected.
  
• Many parents express the need for help and information on how to recognise signs of heart failure.
  
• Occasionally, parents disbelieve the severity of their child's heart condition, particularly as some show very few symptoms in their early years, e.g. the period when the pulmonary vascular resistance is rising and to a great extent compensating for the effects of the defect. This 'honeymoon period' is only temporary and it usually coincides with the optimum time for surgery.
  
• Programmes of stimulation are routinely recommended for children with Down's Syndrome, and parents often worry about the strain that some physical exercise may place on the heart. While they should ask the advice of the cardiac consultants, it appears that only the more vigorous programmes, such as those pioneered in the USA are likely to put undue strain on the heart.
  
• It is easy to underestimate the effect which the news of a heart problem has on the parents of a child with an intellectual disability. Having already come to terms with one disability, they have grown to love their child in a very special way. Some say that the bond between them is, if anything, stronger than that which exists with their non-handicapped children. For the children and young people for whom surgery is neither possible nor recommended, there is the feeling that a time-bomb has been triggered. Well meaning, but sometimes insensitive words of comfort can be extremely painful for these families.
  

• Cardiologists recommend that all babies born with Down's Syndrome are given an echocardiogram (ultrasound scan of the heart) to check for the presence of any heart problems.

Sourced from the Down's Heart Group web-site in 2002.

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