Parents of children with congenital heart disease

Emergency surgery

Sometimes a baby needs surgery within a few days of being born in order to survive. Some parents already knew that there was a possibility that their unborn baby might need surgery soon after birth (see 'Preparing for birth and labour').

Others discovered after birth that their child had a congenital heart defect and, in some cases, also needed to have immediate surgery to survive. Parents felt bewildered, shocked and stressed. One mother describes having to follow on after their baby was transferred to a specialist hospital for emergency surgery in the early hours of the morning shortly after birth.

Sometimes a baby's symptoms are not discovered at birth. Severe symptoms or heart failure, requiring emergency surgery, lead to hospital admission some time later. One couple describe how their daughter was admitted to hospital when she was 5 weeks old, needing surgery within 48 hours. Another couple recalls the shock when their three-week-old daughter was admitted to hospital on Christmas Day.

When a child is admitted to hospital suddenly, it can be difficult for parents to take in all that is happening. One mother felt totally unprepared and in shock when she discovered her baby had to have heart surgery within a few days.

Parents described having been going about their daily lives in the morning and later the same day seeing their baby in the intensive care unit being prepared for heart surgery. One mother had one morning been at home washing nappies and making toast and peanut butter for her toddler, and later on that day her baby was being transferred to a specialist hospital attached to an oxygen monitor. One couple explains that the intensive care environment where their newborn baby was before her operation was very calm, and that had helped them to keep calm.

Making sure that parents are given information and explanation can be difficult when staff are occupied with making a very sick baby stable. One couple recalls that the staff explained very well what was happening when their newborn baby was transferred in the middle of the night to the specialist hospital for emergency surgery. Parents said that the risks of their child's operation were also explained.

When surgery is required immediately, parents have no time to seek a second opinion and need to trust their doctor's decision. One mother recalls that there was no option other than to consent to their baby's surgery, otherwise he would die.

When a child is admitted to hospital in an emergency, parents with other children need to make sure they are looked after. One couple took their older son with them to the hospital because there was no one who could look after him. Often grandparents were called upon to look after other children. One couple describes the dilemma of meeting their older son's needs when his baby sister went into hospital.

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Last reviewed July 2018.


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