Baby in neonatal unit (NICU) after an emergency birth

There are many reasons why a baby may need to spend some time in a special care unit (SCBU) or a neonatal intensive care unit (NICU). These units offer different levels of care, depending on what is most appropriate for the needs of the baby. Sometimes there is a problem with the baby when he or she is born. Sometimes, their mother develops a condition (e.g. pre-eclampsia (high blood pressure) or placenta praevia (the placenta may be partly or completely covering the cervix/birth canal) that means that the baby is delivered early, and so needs extra care and monitoring for a few weeks.

Helen’s baby was delivered at almost 33 weeks when she developed HELLP syndrome (a combined liver and blood clotting disorder). He was  4lbs 8oz (2.05kg) when he was born and stayed in hospital for 3 weeks until he was big enough to go home.

Samantha’s baby was born at 29 weeks gestation when she developed pre-eclampsia. Her daughter was in special care for 7 weeks before she was able to come home. Alex had placenta praevia and was in hospital for several weeks before her baby was born at 34 weeks. Doctors had been keen for the baby to develop for as many weeks as possible before she was born.

Alex had placenta praevia. Her baby was born at 34 weeks by caesarean section and had breathing…

Age at interview 37

Gender Male

Age at diagnosis 36

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For some babies, their prematurity can lead to problems. Kerry had placenta praevia and her baby was born at 28 weeks and in special care for 11 weeks.

Kerry’s baby was born 12 weeks early because of her placenta praevia. At 18 months old he is not…

Age at interview 27

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Age at diagnosis 25

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Sometimes, if clinicians are aware that the mother’s condition may lead to a premature birth, they are able to prepare the parents for their baby being in special care (SCBU). When she was admitted to hospital with pre-eclampsia, doctors came to talk to Samantha and her husband about what would happen if their daughter was born at 29 weeks gestation, so they felt prepared. Alex saw the special care baby unit before her baby was born, which had helped to reassure her.

Michael and his partner had met doctors and talked through what would happen if their son was…

Age at interview 32

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Age at diagnosis 32

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Others were not so well-prepared.

Rob’s wife had placenta praevia, and their daughter was sent to special care after she was born…

Age at interview 34

Gender Male

Age at diagnosis 29

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It can be very depressing and frightening for parents to see their baby attached to wires and monitors and feeling there is very little they could do for them. Craig said he tried not to connect with his baby at first because he was scared that he would lose him. Being able to cuddle her baby, change his nappy and help with feeds had helped Helen cope.

People talked very highly of the staff in the special care units, Craig said they were “absolutely amazing”. Some described the atmosphere as calm but noisy. Michael, whose son was in special care for 3 weeks, said, “There’s lots of medical equipment there, monitoring the breathing, monitoring the heart rate of all the different babies, so there’s just this constant sort of beeping and buzzing of different machines in the background.”

Mothers described feeling very distressed that they were separated from their babies, although this was often to do with their own health status.

Farkhanda was in intensive care and it was 7 days before she could go and visit her son in…

Age at interview 35

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Age at diagnosis 34

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Samantha was keen to see her daughter as soon as possible, but had to wait several hours because…

Age at interview 32

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Age at diagnosis 31

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Some mothers were able to establish a visiting routine while still in hospital. Helen began visiting her son several times a day. “So I would try and go up during the day every time pretty much [he was fed] and sometimes I’d go up in the night if I couldn’t sleep.” However for other mothers it was not easy. They needed to recover from the birth.

Alex had high levels of medication to help her recover and she described the early days in hospital as a “bit of a blur”. Belinda was wheelchair-bound while in hospital: “I do remember the NICU staff being quite nasty about the fact that I never saw the baby, but the problem was I couldn’t actually wheel myself up to another part of the hospital to go and see the baby.”

It was important for some women to try and provide breastmilk for their babies while they were in special care, although some found this quite stressful. Alex expressed some colostrum for her daughter, as she felt “that was the only thing I could do for her”. However Hana found this really difficult with twins.

Hana had twins and found it very stressful trying to breastfeed one baby and express for her son…

Age at interview 38

Gender Female

Age at diagnosis 38

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Having a wife or partner in one part of the hospital and a baby in another was described as stressful by some of the fathers and partners.

Often the mothers were discharged before their babies. Although they quickly slipped into a routine, the daily travel to and from the hospital, and spending hours at their baby’s cot-side was very tiring. Especially as many women were recovering from surgery or severe illness themselves. Many talked of the difficulties of transport, as they often could not drive after their surgery. Samantha got cabs for a few days and then buses, which took a long time. Kerry drove to the hospital. She is aware that this may have delayed her own recovery, but she could not afford the cost of a cab. “I was walking with my back arched. I couldn’t straighten myself up. But I just thought, you know, they are my kids, I have to do it.”

Helen described the exhaustion of travelling to the hospital every day to visit her son, while…

Age at interview 31

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Helen, whose baby was in special care for 3 weeks, decided she needed to be well enough to care for her baby when he did come home, so she spent some of the day at the hospital with her son but not all of it. Making use of the facilities in the parent’s room had helped to make her time there less tiring. The night before their baby came home Samantha and her husband stayed in a flat next to the special care unit which was especially for parents.

Alex felt guilty for the time that she was not in hospital with her new daughter, but staff encouraged her to also spend time at home with her toddler.

Hana was discharged with her daughter, but her son remained in special care. She felt guilty that she was only able to get to see her son once a day.

Alex had a toddler at home, and her second daughter was in special care. She felt guilty when she…

Age at interview 37

Gender Male

Age at diagnosis 36

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Overall, having a baby in special care was very traumatic for parents. Alex said, “that rollercoaster, you know, it’s so traumatic for you at the time, and there’s always someone else that is worse off, and you know, these little babies coming in at 1lb and 2lbs and you think, gosh, what we’ve gone through is nothing.”