Key Facts from the Down's Heart Group
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.
Down's Heart Group (UK)
Latest research suggests that in every 700 births, one baby will be born with Down's Syndrome. Approximately 47% of these babies will also have a congenital heart problem.
The whole range of heart defects may be found in people with Down's Syndrome. Some are mild and cause few problems, but they are more commonly of a serious nature, although with modern techniques the majority are operable with excellent success rates.
Although it is only rarely found in the non-Down's population, the most common defect in patients with Down's Syndrome is the Atrioventricular Septal Defect (AVSD) often with a common AV valve and a hole between the two sides of the heart. This serious defect affects the centre of the heart and is often murmur-free, thus adding to the possibility of late diagnosis.
The most common sort of cyanotic defect in patients with Down's Syndrome is Tetralogy of Fallot. This is often found in combination with the AVSD.
Most experts are now convinced that patients with Down's Syndrome are more prone to pulmonary hypertension / pulmonary vascular disease than their non-Down's counterparts. Successful surgery will usually prevent the continuation of Pulmonary Hypertension and the development of Pulmonary Vascular Disease. Early diagnosis of a heart problem is essential so that surgery can be performed before 6 months of age.
Many of the early symptoms of a major heart defect, e.g. poor weight gain, lack of energy, feeding problems, are often mistaken (both by professionals and parents) for characteristics of Down's Syndrome itself. All babies with Down's Syndrome (symptomatic or otherwise) should be offered a heart scan as soon as possible to establish their cardiac status.
Many parents express the need for guidance on how to recognise signs of heart failure, they are naturally anxious to recognise any changes in their child which may require medical treatment, but at the same time do not wish to be labelled as "neurotic and over anxious". It can be a fine balance for already experienced parents and exceedingly difficult where this is the first child.
Severe early feeding difficulties are often a major problem for these babies. However with patience and perseverance breastfeeding can be successful and should not be discontinued due to poor weight gain without consideration and discussion. Whether breast or bottle fed, many babies will need calorie supplements and feeding via a naso-gastric tube to facilitate weight gain.
Parents of people with Down's Syndrome face all the same worries as all parents when their child is diagnosed with a congenital heart defect, but they may also worry about ‘prejudice' in their treatment and question the motives of hospitals in recommending or advising against surgery. It is quite acceptable to ask for a second opinion at a different hospital if parents have any concerns, and this will not affect any future treatment at either hospital.
As with all children, 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.
Occasionally, parents disbelieve the severity of their child's heart condition, particularly as some show very few symptoms in their early years, i.e. 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; therefore the optimum time for surgery is often when the child is very young before complications can occur.
Many people with Down's Syndrome, even those with severe heart problems, attend mainstream schools and lead full and quite active lives.
Programmes of stimulation, such as Portage or physiotherapy, are often recommended for people with Down's Syndrome, and parents may worry about the strain that physical exercise may place on the heart. They must, of course, ask the opinion of their medical advisors, but only the most vigorous exercises are really likely to put undue strain on the heart and it is generally accepted that an appropriate level of exercise is beneficial to the patient.
It is easy to underestimate the effect which the news of a heart problem has on the parents of a child already diagnosed with a learning difficulty. Having already come to terms with one disability, which for some parents is extremely difficult, they have formed a very strong and protective bond with their child. Well meaning, but sometimes insensitive words can be extremely painful for these parents, especially if surgery is not possible or not recommended. Waiting for an operation, or worse still living with the knowledge that their child cannot have surgery, can be a very stressful time for families.
Sourced from the Down's Heart Group web-site in 2002 and updated in 2011.