Parents of children with congenital heart disease

Signs, symptoms & diagnosis after birth

Congenital heart disease is one of the most common types of birth defect, affecting up to 9 in every 1,000 babies born in the UK. (NHS Choices 2015).

Some parents know during pregnancy that their baby has a heart condition. In some cases, the diagnosis is made at birth and in others it is discovered some time later. Occasionally, congenital heart defects are not picked up until a child is older. 

Signs of congenital heart disease in babies and children include heart murmurs, rapid heartbeat, rapid breathing and blueness (cyanosis), excessive sweating; older children may complain of extreme tiredness, dizziness or fainting. Some babies with congenital heart disease have trouble feeding which can be due to tiredness and rapid breathing and this can lead to poor weight gain.

Some parents discovered their baby had a heart condition while in hospital after birth. One baby's complex heart problem was discovered during his routine discharge examination. Another couple, whose baby had blue lips, was a bit listless and was not gaining weight, discovered five days after birth that he had a heart murmur. Tests revealed an atrio-ventricular septal defect (AVSD), which would need surgery within a few months.

Another mother said that her baby didn't cry, slept a lot, didn't feed and was a burgundy colour for 24 hours after birth. An ECG and chest X-ray at the maternity hospital showed problems with her baby's heart. He was then transferred by ambulance to the specialist hospital where a heart scan revealed a complex heart condition requiring emergency surgery.

Several parents did not discover that their baby had a heart condition until they were at home, several weeks or months after birth. One couple explain that their baby had no symptoms, and it was only at his routine six-week check up that the GP noticed a loud heart murmur and referred them immediately to the hospital.

One mother recalled that when she put her head on her baby's chest she could hear the heart beating hard and after having a 24-hour electrocardiogram when he was 3 months old, he was diagnosed as having hypertrophic cardiomyopathy.

Some parents who had been concerned about their baby's symptoms, for example, feeding problems, breathing problems and poor weight gain, had taken their child to their GP. They were referred quickly to the specialist hospital where various tests, such as an electrocardiogram, chest X-ray or echocardiogram were done, and they were told their baby's diagnosis.

Others found it difficult to get their health visitor or GP to take their concerns seriously. In some cases, by the time the baby was referred to the specialist hospital their symptoms had become severe and they were dangerously ill. One mother describes the concerns she had about her baby's feeding and poor weight gain and how for five weeks the health visitor told her she was an anxious mother. When she insisted on seeing the GP, he immediately recognised that something was wrong and referred her baby to the hospital where she was told that they were only just in time to save her life.

Another mother who sought advice from her GP about her baby's colour and breathing when he was 11 days old was told that 'he just had a cold and to go home and get some sleep'. She ignored this advice and followed her gut instinct that his problems were serious and took him to hospital and saved her baby's life.

One father who visited his GP on many occasions over three months about his son's feeding problems, poor weight gain and persistent cough, was only taken seriously when the cough became so severe that they insisted that the GP check his chest, and his heart murmur was finally discovered.

Another mother recalled that that she felt the doctor didn't check her baby properly at the discharge examination. For five months she had difficulty feeding her but each time she expressed her concerns to the health visitor she was told to try another method of feeding. It was only when she was seen by a different GP for a cold that she was told the baby was cyanosed, and she was rushed to hospital and found to be in heart failure.

Sometimes congenital heart disease is not discovered until the child is older. One mother explains that her two-year-old daughter was well apart from occasional breathlessness that had got worse while they were on holiday. The GP discovered a heart murmur and she was referred to the specialist hospital where tests found a partial atrio ventricular septal defect.

The British Heart Foundation produces a series of booklets called ‘Understanding your child’s heart’ and a DVD 'Children with Congenital Heart Disease - Understanding Your Child's Heart' please see their website for more details.

Last reviewed March 2015.

Last updated March 2015.

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