When extra care is needed for mother and/or baby

In addition to the usual issues related to breastfeeding in the time surrounding the birth of a baby, there were several other concerns that were very similar whether it was the mother or the baby or both who needed extra care. They included:

  • the need to be listened to and the importance of a diagnosis; 
  • feelings of helplessness and vulnerability and related to that the need to rely upon other people for emotional support and practical assistance;
  • the variability of health professionals in their knowledge of breastfeeding and awareness of its importance to the mother;
  • the importance of breastmilk, both the mother's own and donated breastmilk, and the determination of the women to provide it; 
  • the danger of health professionals, family and friends becoming focused on either the mother or the baby to the exclusion of the other or becoming focused upon a condition rather than the person;
  • the impact upon breastfeeding of the medical environment, medical equipment, tests and treatments including medications;
  • the all-consuming nature, in terms of time, energy and emotional resources, of dealing with an extraordinary situation and the isolation that may occur as a result; 
  • and the desire to strive for normality in their lives.

Separation of the mother and baby after birth was an issue for women who were ill and needed extra care and for women whose baby was ill. Several women appreciated being able to spend time with their newborn baby before he/she was put into an incubator, admitted to the Special Care ward or taken away for treatment (see 'Support from hospital staff'). They talked about the importance of skin-to-skin contact (sometimes called kangaroo care) soon after the birth and later on during their or their baby's hospital stay.

Other women, who did not have the opportunity to spend time with their baby after the birth, said that they were anxious about not putting their baby to their breast, the impact that it would have upon their ability to establish breastfeeding and the effect upon their relationship with their baby in the longer term (see 'Dealing with difficult times'). For some women, though, this fear was unfounded as they were able to establish breastfeeding later on. A few women worried about finding themselves in a completely different part of the hospital from their baby or even in a different hospital altogether. One woman said that she longed for “the days when one could have a specialist mother and baby unit where we could both have been looked after in the same ward” (see 'Support from hospital staff').

Several women talked about how much easier it was once they had a diagnosis and knew what they were dealing with and what the future held. They also said that it was important that they were listened to, especially when they said that they thought that there was something not right with their baby or when they said that they wanted to breastfeed. Several said how helpless they felt. They were reliant upon other people to do things for them and practical aids to make things easier, such as a beanbag, a bra that enabled hands-free expression of milk from both breasts at once and special bottles. One woman with a broken arm was able to continue to breastfeed and even change positions single-handed.

Mostly, the women praised their family and were grateful to their health professionals for the support that they gave them. However, several mentioned the lack of knowledge about breastfeeding of staff on non-maternity (and sometimes even on maternity) wards and an insensitivity or lack of awareness amongst some health professionals of the importance of breastfeeding and mothering. One woman who was confined to bed couldn't get to her crying baby in her crib and couldn't summon help either. Another, who was very ill, said that everyone else was looking after her baby but her and that she wanted to take control of the mothering of her daughter but didn't have the energy to do anything about it (see 'Support from hospital staff').

Most women with sick babies said that they too felt helpless and that there was very little that they could do for their baby other than to be with them and to express and provide their breastmilk. Breastmilk (whether their own or donor milk), therefore, became a precious commodity and an important focus for the women. They were concerned to maintain or build up their supply and even to build up stores of expressed breastmilk in the freezer. Several worried about wasting and discarding it because it had taken so much effort to produce and one woman said that her health professionals were apologetic about wasting some of her milk. Many of the women who expressed breastmilk later became milk donors (see 'Variations of the breastfeeding experience').

Several women mentioned the danger of focusing on the medical condition of either them or their baby and forgetting about their other needs or the needs of other people. Sometimes interventions (like the medical equipment, investigations, medications, desire to know how much the baby had drunk, what was the baby's body temperature, blood sugar levels or weight) were not very compatible with breastfeeding. Several women commented on the use of nasogastric tubes saying that they found them distressing and wondered if they were used too readily and became relied upon when breastfeeding could be tried. One woman, who had a home birth, said that she was glad to have avoided all of the medical interventions that her daughter who had Down's Syndrome would have been subjected to. Some women began to wonder just whose baby she/he really was. “Initially, when I looked at her in the incubator, she didn't feel like she was mine,” said one woman. Another woman was so ill that her life was in danger and her health professionals were so focussed on her medical condition that they forgot that she had just given birth, had milk coming in that needed to be dealt with and had a strong desire to be with her baby.

One woman said that she wanted people to focus on her daughter as a person who happened to have Down's Syndrome rather than a Down's Syndrome baby (see Interview 19 above). Another talked about being isolated because of the time that it took to care for her baby and how she had to make a special effort to keep up with friends (see Interview 13 above). Several women talked about looking forward to the time that they and their baby could go home, get on with breastfeeding and get back to a normal life (see Interview 41 below).

Fuller, edited narratives of the following interviews are provided as written clips because they give more detail of the women's experiences than it is possible to cover in this topic or the video clips.

*Footnote: The book that this woman refers to is “Breastfeeding Special Care Babies (Second Edition)” written by Sandra Lang.

Last reviewed November 2018.
Last updated September 2015.


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