Parents of children with congenital heart disease

Taking your child home

Parents described a mixture of emotions when taking their child home from hospital, either after surgery or after birth. Several couldn't wait to get home after being in hospital. One father describes feeling frightened at first of the responsibility of caring for their baby at home but said these feelings soon passed. A mother explains why she felt confident and relieved to be bringing their daughter home after surgery.

One couple who were relieved that surgery had been successful were nervous about administering medicine at home, but knew they could phone the ward at any time if they were worried.

Some mothers found it hard to cope with feeding problems, giving medicines, sleepless nights and worry about symptoms when their baby first came home from hospital. One mother had felt very alone even though she knew the medical support was there if she needed it. Another said she was excessively protective of her baby when they were first home after surgery but became more relaxed after a time.

Parents were given the symptoms or signs to look out for when they took their child home. One mother, whose baby has Wolff-Parkinson-White Syndrome, explains that she became obsessed with checking her baby's pulse. She felt overwhelmed with the responsibility of caring for him when she first brought him home from hospital but now she has learnt to cope when her son has an SVT episode.

Another mother explains that she needs to be aware of changes in her child's health because of the episodes of tachycardia he experiences.

Many parents described being constantly anxious about their child when they were first home from hospital. At first it was difficult to learn which symptoms were related to their child's heart condition and cause for concern, and which were minor.

Many had gone back to the hospital, or telephoned the ward for advice about their baby's symptoms. Parents recalled that they had never been made to feel they were wasting doctors' time (see 'Follow-up').

Getting medical advice about symptoms can be more difficult if parents do not live near the specialist hospital and cannot easily take their child to the hospital. One mother who lives on one of the UK islands learnt that if she had concerns she could call the specialist and she has always found them willing to speak to her and answer her questions.

One couple describes an incident when they needed medical advice late in the evening and their local hospital could consult the specialist hospital.

Several parents mentioned that when they took their child to their GP with some worry, they never had to wait for an appointment.

A few parents had taken a paediatric first aid course which had helped them to feel more confident in caring for their child at home.

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Last reviewed July 2018.


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