Experiences of pre-term birth, special care, stillbirth and death of a baby

Most of the parents we spoke to experienced healthy pregnancies and had healthy babies. A few people we talked to described distressing experiences of pre-term birth, babies requiring special care, stillbirth or late miscarriage, and the death of newborn baby.

Several women experienced a threatened pre-term labour. They described this as causing distress and anxiety. When Melanie was 24 weeks pregnant with her first child, her cervix was shortening and she was admitted to hospital for three weeks on bed rest. Fortunately, her baby was born at 37 weeks.

Melanie described her experience of hospital bed rest for her threatened pre-term labour.

Some mothers went into labour and gave birth early. During her third pregnancy, Sarah M began bleeding at 28 weeks and was hospitalised. On her ninth day in hospital she started to have contractions and gave birth at 30 weeks.

Sarah M felt frightened before her son's premature birth, and sad afterwards when he had to go into special care.

Twins are more likely to be born early, as most twin pregnancies do not continue beyond 37 weeks. Among the five parents we talked to who had twins, only Tolai, a migrant mother from Afghanistan, gave birth at full term. Andrew's twin son and daughter were born at 32 weeks and had to go into special care for seven weeks. Two women had their twins delivered by caesarean early due to concerns for the mother's health.

Due to problems with her liver, Kahli's twins were born by caesarean at 36 weeks.

Sometimes babies are delivered prematurely due to congenital anomalies (birth defects). Tony's daughter was found to have a birth defect known as gastroschisis, and had to be delivered early.

Tony described his daughter's premature birth via emergency caesarean, followed by immediate surgery.

Often preterm or newborn babies need time in a special care baby unit or intensive care. Parents described their babies being admitted to special care for a number of reasons including low blood sugar (hypoglycaemic), neonatal jaundice, meconium on their lungs, not putting on enough weight, and injuries resulting from a difficult birth. One baby contracted viral meningitis, while Georgia's two daughters were each admitted to intensive care due to breathing difficulties.

Georgia's second baby developed breathing difficulties at 5 weeks. Waiting for her to be admitted to intensive care was frightening.

Parents often found the experience of having a baby in neonatal intensive care distressing. Sarah M had never seen a premature baby and was taken to special care when she was hospitalised for her threatened pre-term birth: 'the babies are tiny and the mums are sad ... it was scary'. Parents also described finding it hard being separated from their baby, especially when they were anxious about their baby's health. Several people talked about the difficulty of having to leave their baby in hospital. If they already had children, juggling their time between their baby and other children was challenging. A number of parents talked about their experience as a 'revolving door' between hospital and home, and how exhausting this was.

Erin's premature baby had to spend one month in special care. She and her husband had to reorganise their lives to balance caring for their new baby in hospital and their other children at home.

Parents praised the hard work, skill and dedication of the staff in special care, but were also critical of some aspects of their experience. Two parents were upset when they discovered their babies had been fed infant formula while in special care.

Kirsty felt like she had 'failed' as a mother when her daughter was given formula while in special care for jaundice.

Late miscarriages, stillbirths and neonatal deaths were very distressing experiences. Two parents we talked to lost their babies either during pregnancy or after birth, a single mother and a father in a same-sex relationship. Sian went into labour at 17 weeks due to an 'incompetent cervix'. The experience was very traumatic because the doctors could not do anything to save her baby.

Sian felt her body had let her down when her daughter died at 17 weeks' gestation.

Daniel and his partner were expecting twins via surrogacy in India. At 20 weeks their babies' surrogate mother experienced bleeding. When she was examined, only one heart beat could be found. An emergency caesarean was performed at 26 weeks. One twin was stillborn and the other was admitted to neonatal intensive care, and died six weeks later. Daniel said he had not been aware of the risks of twin pregnancies and felt helpless and responsible.

Daniel described his grief at the death of his twin sons.