Parents of children with congenital heart disease

Preparing for birth & labour

Parents we interviewed who discovered during pregnancy that their baby had a congenital heart defect were encouraged to visit the intensive care and special care baby units and the cardiac ward before their baby was born. Those who did had found it helpful to become familiar with the environment that their child would be in after birth. One mother said that the information the fetal cardiologist gave her had helped to prepare them for their baby's birth.

Many felt apprehensive about what the birth would be like; for example, whether the medical support would be available and what condition their baby would be in. One couple explained that despite their fears beforehand the birth had gone very smoothly. One mother who lived far away from the specialist hospital was glad when it was decided to keep her in hospital for 4 weeks before the birth.

Some mothers had had a natural birth. A few had a caesarean section. One mother chose a natural birth because she felt it was the one thing she could do to help her baby. Several parents recalled that their baby's condition was better than expected at birth, in a few cases it was worse than expected.

At birth, some babies could stay with their mother and were discharged a few days later with a follow-up outpatient appointment (see Interview 12). Other parents said they could only hold their baby for a very short time before it was taken to the special care or intensive care unit.

Being separated from your baby after birth can be very distressing. Several mothers had found the return to the maternity ward without their baby very difficult. Seeing their newborn baby in an incubator attached to various wires and monitors was also very hard.

Some babies were transferred to the specialist hospital by ambulance for treatment or emergency surgery and parents were able to follow on afterwards. When a baby was transferred shortly after birth, some mothers could also be transferred to the same hospital.

One mother who suffered a lot of bleeding and could not be transferred to the specialist hospital found it very difficult not to be able to care for her baby. Another mother had felt frustrated that she hadn't been able to spend much time with her baby who had to have emergency surgery soon after birth.

Last reviewed December 2014.

Last updated December 2014.

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