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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.
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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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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..
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