The mothers' experiences after childbirth regarding breastfeeding, glycemic control, support and well-being is understood as them being extraordinary exposed. The narratives illuminate that, during the postpartum stay, they felt abnormal compared to other mothers, with extraordinary care requirements related to instable blood glucose both for themselves and their newborns who were also in need of early supplementary feeding; especially when suffering from other neonatal complications:
Your stay at the maternity ward is a little different when you've had a baby and have diabetes. I was in a room with a lot of people who kept coming and going, they went home after a couple of hours....I didn't like it at all....because they had to keep waking us up to check our blood sugar and to give our babies extra feeds. (I:4)
What the exposure constitutes and how mothers dealt with it is organized into seven themes of meaning exemplified in quotes and followed by a conclusive interpretation. The quotes are marked as individual interview (I:1-4) or focus group (FG:1-6).
The Breastfeeding Struggle
Breastfeeding appeared to be a struggle. The mothers were aware of the child's initial need for early feeding in order to avoid hypoglycemia. The supplementary feeding made it harder to get the child to suck properly at the breast nipple, and often the child became "lazy", preferring the easier method of receiving food - by spoon or bottle. Not being able to establish breastfeeding or having an insufficient amount of breast milk could reveal feelings of pressure, guilt, insufficiency and increased stress:
That was the hardest part; she had to keep eating all the time, because her blood sugar was so low... and I was really stressed because she had to eat so much, so I didn't know how to breastfeed. (F:4)
Supplemental feeding was expressed as a worse alternative than breastfeeding. Some mothers did not understand the care providers' motive for advising it. Other mothers expressed frustration or worry in relation to sometimes inflexible maternity care routines. The negative attitude and behaviour of the health care staff during maternity care contributed to the feeling of frustration and could include inflexible routines such as lack of a common structure for breastfeeding support, when the breastfeeding support was "too physical", or as follows:
He was happy and fell asleep until a night nurse came and told me off, asking if I hadn't been told how dangerous it was (to use a plastic nipple shield) and if he wasn't feeding right ...She said, "He won't get as much as he needs, there might be infections, he could completely lose his ability to suck and so on and so forth"...It made me feel just terrible.
Here I thought I was doing just fine and then she made me feel completely useless. (F:4)
Feelings of guilt and insufficiency could remain long after discharge from maternity care, affecting the mothers' well-being. A great part of their life during this period was dedicated to feeding the baby. One mother expressed that she became depressed for several months due to feeding problems. The struggle to breastfeed was also related to frequent episodes of maternal hypoglycemia. One mother expressed she did not believe that the struggle was worth the fight and perceived that she" got her life back" (F:1) when she gave up breastfeeding and began supplemental feeding.
Driving Force to Breastfeed
Despite the challenges and obstacles experienced related to establishing breastfeeding, a prominent urge to try and persevere was obvious in the mothers' discussions. One reason for this drive was that other women, without diabetes, breastfeed. The self-image of being a "good" mother made it important to be like those healthy mothers and just make it work; as one mother said: "I have to be able to do it too" (F:1).
For some mothers, the breastfeeding struggle decreased after discharge from hospital. Coming home seemed to promote a reliance on their own resources and a release of pressure: "Actually, I was so happy to be home. I thought, Yes, I can handle this, I'll manage. It wasn't that stressful and not... so much pressure" (F:1). For others the struggle to establish satisfactory breastfeeding routines and endurance to breastfeed could continue for several months:
Mother: I gave him extra feeds with formula and he just cried when I tried to breastfeed.
Moderator: So you must have been really persistent. It seems like it was important for you to breastfeed?
Mother: Yes, that's what the nurse at the paediatric care centre said too, she said, "For goodness sake, give it up! You can just give him some formula."
And I said," Yes, but just let me try one more thing and then one more and one more." After a month I gave him an entire feed (from my breasts), just like that. (F:5)
On the other hand, confidence in the ability to breastfeed was another illuminated aspect. This included expressions of gratitude and sometimes astonishment at how well breastfeeding could eventually work out after the initial struggle. Multiparous women with negative experiences from previous breastfeeding described how they felt more prepared and could thereby manage their blood glucose fluctuations more effectively. As one mother expressed "somewhere at two or three months there was going to be some kind of rhythm to my blood sugar levels and my breastfeeding" (F:6).
Another dimension of the mothers' exposure after childbirth was an increased vulnerability. Extensive bodily changes with unexpected physical reactions were present and implied unpredictability and a sense of insecurity in daily life. With a few exceptions significant blood glucose fluctuations were experienced, from very high to extremely low levels. When the blood glucose became very low one did not dare rely on the body's signs and signals:
I was dead tired... I saw that they were here but didn't notice how low my blood sugar was then.... I woke up after they gave me the shot. (F:4)
Professionals on the maternity ward could contribute to reinforcement of feelings of vulnerability, as when having insufficient knowledge about diabetes, or being unconcerned or ignorant. This could include not paying attention to the mother and her diabetes; having the only focus on the child's needs.
You're both a new mom and you have diabetes too. You're lonely, vulnerable and fragile, just like any new mom. And then you have this disease, so you need another type of, more intense support from someone who knows about both diabetes and being a new mom. (F:2)
Furthermore, vulnerability could be reinforced when being separated from one's child during the early postpartum period. Sometimes postpartum tiredness and complications hindered the mother-child contact. This was particularly evident when the mother was in the intensive care unit.
So I was lying there just thinking about how much I wanted to see my baby but no one wanted to take me up there and they weren't giving my husband any information. (F:3)
Mothers separated due to the child 's need for neonatal care, felt a need to participate in nursing the child; not be considered as "being in the way". However, some mothers experienced that the neonatal staff dictated the terms for their presence and participation:
They actually didn't ask if I wanted to feed my baby myself. They really made a big deal about it, that I wasn't supposed to be there at all with my son between feeds, just when he had to eat. Then I was supposed to offer him my breast first and then feed him with a cup. (F:1)
To be discharged from hospital, responsible for the child and fearing one's own hypoglycemia was another part of the vulnerability. Frequent hypoglycemic episodes were experienced during the breastfeeding period, leading to feelings of an unpredictable and unsafe daily life which decreased energy and could imply feelings of self-pity. The worst case scenario was becoming unconscious when alone with the child and having responsibility for a child.
Mother 1: I was mostly scared of dropping her on the floor. It was when I was lying down, which is why I didn't see the connection at first.... I'm sort of tired. I had her on my outer side near the edge of the couch but somehow I've always managed to keep a hold of her. And she had fallen asleep because she was full and happy. And then her kicking me and crying woke me up. That didn't feel safe at all.
Mother 2: I can be unconscious with my baby beside me when my husband comes home. This time it's only happened once.... when my husband has been home but it happened several times with my first baby. And nobody contacted me to see how I was doing either, because I was at home. So it's been real difficult. (F:4)
Restraining glycemic instability
The mothers expressed how they had to struggle with restraining their own glycemic instability. It was a challenge to stabilize blood sugar and it could take one to two months until their insulin requirements became stabilized. Various strategies for managing this were described where decreasing the amount of insulin was the most common action. Very few on the other hand had to increase the dose. For some, dosage had to be reduced gradually, for others very dramatically. As an exception, some mothers had not experienced extensive problems with blood sugar fluctuations. This was interpreted as being related to a more deliberate attitude and a choice of living with higher blood glucose levels. A common experience was that the required adjustment of insulin doses was the mother's own responsibility. Some were confident in doing this; others perceived it as being difficult and felt lonely in the decision-making.
It was a major adjustment since you're used to taking so much insulin and then, just from one day to the next, you go back to your old dose. I thought that was really hard and I took the wrong dose a lot. I went back to my old doses...took too much insulin. (F:6)
Although the mothers were used to planning daily life according to the demands of their diabetes, it was a new experience to have to prepare for breastfeeding occasions in order to avoid hypoglycemia. Consequences of not being able to handle the body's reactions when having hypoglycemia could cause some women to simply wander about, instead of getting food or some sweets. Placing sweets and juice in suitable locations was a part of the preparation in order to obtain a rapid sugar supply of glucose during breastfeeding. Another strategy for dealing with hypoglycemia was to consciously strive for higher blood sugar levels, or to monitor blood glucose more frequently before breastfeeding, especially initially. Avoidance of being alone with the child at home was another way of managing the precarious situation of being a mother of a newborn and having diabetes. The hypoglycemia created insecurity and the perception that breastfeeding could be risky.
Yes, I felt very insecure and that's also the main reason I quit, because I was scared, what if I drop him while I'm sitting here? (F:1)
Several mothers felt a strong need for monitoring and controlling own blood glucose in order not to jeopardize their capacity to take care of the child. While it was sometimes necessary to prioritize one's own diabetes related needs, it could be considered unfair to the baby:
Mother 1: It's just like you say, you have to put yourself first. Both times I've been kind of frustrated...I've really cursed this diabetes, that I have to finish eating....it feels unfair that I can't just, like, pick her up and breastfeed her.
Mother 2: Other babies whose moms don't have diabetes have it different. (F:3)
Down-prioritizing one's own needs
According to the mothers' narratives, the child and breastfeeding had first priority and it could be difficult to find time to prioritize one's own diabetes-related needs. Despite the awareness of less than perfect diabetes management, an overall expression of satisfaction with the healthy baby and successful breastfeeding was expressed. However, the diabetes was described as being like another child to take care of and breastfeeding and diabetes control were more than a full-time job. There was not enough strength or motivation to maintain the strict glucose control practiced during pregnancy afterwards when the child was "outside their body". A need for relaxation also appeared:
You've been so obsessed with your blood sugar levels during those nine months, so when the baby is born you just think, oh, I'll just check my sugar for the sake of checking but I don't really care what the darn meter says....and then it takes a while before you can take it in, what does the little display really say? So you don't really give a damn about it. (F:5)
Another aspect of the extraordinary exposure evolving from the women's descriptions after discharge from the maternity ward was a sense of disconnectedness and sometimes a feeling of being abandoned. A few had met their diabetes midwife/diabetologist during postpartum care and some had been to a follow-up meeting at the antenatal clinic after discharge. For most of the mothers, support from professionals was experienced as being suddenly interrupted already during care at the maternity ward.
Mother 1: And then, when you've given birth, they suddenly abandon you. No follow-up of how your diabetes is doing. You're supposed to have the time to check your blood sugar when you can't even go to the bathroom. I mean, it's ...nobody gives you any support at all, that's what I felt.
Mother 2: The baby often becomes the centre of attention. You feel like they've forgotten you. I had to get what I needed myself. I wasn't happy when my husband was going back to work. I was worried, what's going to happen if my levels go down really low and what happens if I don't feel well? (I:3)
It had taken several months, sometimes as long as six, before re-establishing the connection with the regular diabetes clinic. The mothers were often expected to make contact themselves, which they did not have the energy to prioritize. When finally visiting the diabetes clinic some diabetes professionals did not pay attention to the passage into motherhood. In addition, with one exception, the child health care professionals seemed to have no knowledge about diabetes in mothers of newborns.
Adjusting to or questioning available support
Another aspect, contributing to the extraordinary exposure was the fact that contradictory advice in relation to breastfeeding was a frequent issue. The mothers asked for a more coherent structure for communication of individual breastfeeding support, as well as between professionals in different settings such as maternity and neonatal care wards. Being confident in the management of one's diabetes gave courage to take initiative or to express disapproval with the care provided. This seemed to be supported by their experience of mainly intensive, continuous and professional support received during pregnancy. Insufficient professionalism, unreliable follow-up etc. was no longer accepted. For reasons such as these, some mothers had changed or tried to change diabetes care provider. One mother had criticized the diabetes nurse for giving insufficient information about care during the postpartum period. Disappointment could also lower the mothers' expectations and make them try on their own:
And you notice real quickly, whether it's at the delivery ward or in some other health care situation, when they give you that kind of answer. Then you give up, you don't ask any more questions, you work it out yourself. (F:3)
On the other hand, when supportive care providers and problem solving advice was available, it was appreciated:
The midwives at the maternity ward are wonderful, because I had no problem with them kind of grabbing hold of my breast and showing me. I thought their take-charge attitude was great, because I wanted some real help. (F:5)
The home setting with proximity to supportive persons seemed to promote security and the mothers' reliance on her own resources. Support from the child's father/partner (who had been forced to largely adjust to life according to the mother's diabetes) was very decisive for handling daily life with the newborn, the diabetes and breastfeeding issues. Other people could also contribute with important support.
And my husband and I have a routine where we have to talk to each other when he gets to work to make sure I'm out of bed and...I'm sleeping when he goes to work, so he calls and checks that I'm up and he contacts me before he has lunch, during the afternoon and when he's on his way home. And my neighbours know I have diabetes and my oldest daughter who's almost five knows that you can call 112. (F:2)
Conclusive interpretation: Extraordinary exposed as a mother with type 1 diabetes
The narratives from daily life illuminate that to have diabetes as a mother of a newborn is a situation of extraordinary exposure which seems to challenge the transition to a confident mother. Although the transition to motherhood is an exposed situation for women in general, these mothers have particular needs which make them further exposed. There is a need for extra care of both the newborn and the mother herself related to complications and increased tiredness after a demanding pregnancy and childbirth. To breastfeed is experienced as a pressure and the newborn's initial need of nourishment to avoid dangerous hypoglycemia seem to increase this pressure to breastfeed. A sense of guilt related to the need for using artificial milk is present, which in turn increases the pressure to be a competent mother. Fluctuating glycemic levels, often with unpredictable hypoglycemia are a particular threat to successful breastfeeding, general well-being and the daily routine. The women's own needs are often down-prioritized. The child's health, the family and the maternal role consume a lot of energy, and to feel satisfied with a healthy baby and successful breastfeeding appears to be more important than stabilizing her own blood sugar levels during this period. As a consequence of this extraordinary exposure, the mothers are in need of intensive support; both from professionals and significant others. As one mother described: " The baby's born but you're still really a candidate for maternity care." On the contrary, the intensive professional care and support during pregnancy and childbirth was, for most mothers, abruptly interrupted after the child was born. This led to feelings of being locked out and in "no man's land" in which no professional maternal diabetes support was provided. A sense of loneliness was present and seemed related to the pressure of establishing breastfeeding and stabilizing the often-fluctuating blood glucose levels. Professional support seemed to be almost absent in daily life and taking the initiative to contacting care providers for assistance was not prioritized. The women's partners have to carry a heavy burden of responsibility in the extraordinary exposed situation the family faces. To meet the overall needs of these women awareness of early post partum exhaustion, co-care of mother-child, and maternal involvement in the care of the child is essential. Respite through concrete help, breastfeeding-friendly attitudes and diabetes-related knowledge in care providers are also important.