Parents of children with congenital heart disease

Paediatric intensive care

Immediately after their operation, children spend at least 24 hours in the paediatric intensive care unit. Children are attached to specialist equipment, drainage tubes, a ventilator and drips to help them recover. Sometimes the chest is left open for a short time after heart surgery and a tape is put over it.

It can be a shock for parents to see their child in this environment. Parents remarked that visiting the intensive care unit before their child's operation had helped to reduce this shock. Some said it wasn't as bad as they had expected. Sometimes one parent found it easier to cope than the other. Others found themselves coping better than they had expected.

One mother described feeling cut off from her baby while he was in intensive care and said she coped by going home leaving the staff to look after him. Another mother recalled that although it was a shock to see her child attached to so many tubes and monitors she could ignore all the equipment and was just relieved that her daughter had survived the operation.

Parents whose children had several operations said seeing their child in intensive care was something they never got used to, they were upset each time. Some parents took photographs of their child in intensive care because they wanted to record what they'd been through and in some cases because they didn't know if their child would survive.

Several were surprised to find how calm and reassuring everything was on the paediatric intensive care unit. One couple mentioned how much better it was than they had imagined (see Interview 17). Some parents recalled that they were surprised how well their child looked. Many said the atmosphere had been bright and cheerful and the staff were always friendly and helpful (see 'Emergency surgery').

Some who had been there for a long time found they could laugh and joke with the staff. Parents felt that the staff were looking after them as much as they were looking after their child. Some parents had found it important to get breaks from the environment every now and again. Others didn't want to leave their child.

Some mothers remembered feeling very helpless when their child was in intensive care because they felt there was little they could do to care for the child. Others recalled that although their child was attached to monitors they could feed, care and hold their child for a short time which had helped. Several told how the staff had encouraged them to become involved in looking after their child.

Every day was another achievement and as their child was beginning to recover another machine was taken off. Some children had moved off intensive care within 24 hours, others left after three or four days, or a week. A few took longer to recover.

A mother whose son had had several operations said it got harder as he got older, because he was more aware of the environment he was in, and that upset him.

After heart surgery children are attached to a ventilator. This is a machine that helps breathing by pumping air into a tube placed in the windpipe, either through the mouth or nose. Children are gradually weaned off the ventilator when they can breathe naturally. In some cases this had taken several attempts. One mother remembered some very hopeful moments and then real lows when it took several times for her baby to come off the ventilator before a slow weaning process was successful.

One mother remembers her distress when her child had pulled the ventilator out herself a few hours after surgery, but she had been able to breathe naturally. Another mother describes her daughter's slow recovery in intensive care and how she finally came off the ventilator.

Sometimes postoperative complications can delay a child's recovery. Fluid collects around the heart after heart surgery and drainage tubes are used to remove it. In some cases, fluid took longer to disappear (see 'Moving to the ward'). One couple describes the scares they had with their baby when he was in intensive care after two of his operations.

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Last reviewed July 2018.


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