Variable support in the hospital
Some babies never do successfully go to full breastfeeding at the breast after discharge
Sometimes it's hard to give up the control of knowing how much an infant is taking from a bottle
Some infants may not grow very well on just unsupplemented breastmilk
The infant's lack of feeding endurance played a role for some mothers and infants
It doesn't feel good to make the decision to stop trying to breastfeed
Reglan was not necessarily the answer
Supplemental nursing systems didn't work for VLBW infants and their mothers
Some families found early support for lactation
Some families could have benefited from basic lactation information in the hospital
The transition from bottle to breast was a major barrier
Maternal stress is perceived to interfere with milk supply
After discharge many families did not experience breastfeeding support from trained health professionals
The value of peer support groups was variable
Breastfeeding, above all other topics that we covered in the focus groups, generated the most discussion and the most emotional responses. Mothers who had planned to breastfeed their infants were often frustrated and disappointed when their dreams were not realized.
Breastfeeding experiences of this group of families with infants born with birth weights less than 1500 grams were highly variable. Focus group families had experiences at many different regional hospitals. The lactation services they received seemed to differ even for those who were at the same hospital. Almost all families reported some initial experience with pumping breastmilk. Only 3 out of 26 mother-infant pairs successfully transitioned to full breastfeeding at the breast. Some mothers discontinued pumping and/or breastfeeding attempts during hospitalization or soon after. Other mothers continued to pump breast milk and provide it in bottles for several months after discharge.
Rates of breastfeeding problems were high, and support for the breastfeeding dyad after hospitalization was very limited in this group of focus group respondents.
Although, in general, all topics at the focus group sessions were approached from the post-discharge perspective, families seemed to have a great deal to say about their hospital breastfeeding experiences.
"When we were separated at birth, I was concerned that I wouldn't be able to breastfeed and that was what I was planning on doing. One of the RNs said, 'use this, go ahead and pump.' I didn't know what a breast pump was and didn't know how to use it and they didn't help me . . .and then for the whole time, I came up for every feeding. They would wake him every three or four hours to feed. I always had a different RN. I would try to nurse, and he couldn't latch on, and I got tired of the RNs handling my breasts, getting too close. I finally said, 'Back off! Let me relax and leave me alone. I don't think the position of what I'm doing here is that important. I need to be comfortable with my child.' They were in my face constantly, touching me, trying to rearrange my child at my breast. Anyway, he didn't latch on for three weeks. He was home for a week before he finally latched. They should have left me alone and given me some privacy instead of being right on me and grabbing my breasts and trying to position him. It just made me totally uncomfortable. If they had put me in a room by myself and let me work with my boy, I think he would have latched on a week or two sooner. But a baby can sense his mother's stress and nervousness."
"And so, there started to become, I think, insurance pressure. That's what I interpreted it as, kind of a financial pressure to push us out and get her nippling. Breastfeeding was going slower than bottle feeding. She was doing both at this point. I don't know what would have been the best solution, but in that sense, it didn't feel like the breastfeeding was supported. It felt like getting her on the bottle was what they wanted because it would get her out quicker. In retrospect, I wish I hadn't done that, you know. I wish I just insisted upon breast feeding totally."
VLBW infants are not ready to nipple at the breast at birth, so all the mothers experienced pumping of breastmilk. Some continued to pump for several months. None liked to pump, and the pumps and supplies were a financial burden.
"I got worn out on being told to keep pumping, keep pumping. This lady would come in with six bottles and I would come in with my measly two. I would think, this will never work. I'm only producing two bottles and it probably took her ten minutes and me four hours. They were like, 'is this all you've got?' Well, yeah this is it, sorry."
"I was having a hard time pumping. It was hard. They were real big on, 'keep pumping, keep pumping,' and that really got frustrating. Really frustrating. I was like, 'I'm doing it, I'm doing it.' I got the alarm set at home, I'm waking up, I'm doing it. You're having to do this but I'm sitting there crying because my baby's not with me."
"Oh, and the other thing that we didn't realize that would have been helpful to know at least for budgeting, for bills and stuff, is that Medicaid doesn't pay for breast pumps. And I think that's really lousy that they don't pay for breast pump rental. You know, cause what are you going to do when your little baby is in the hospital? It's not like the kid is there to help you nurse so you have to pump and Medicaid won't foot the bill for it. We found out the hard way because we thought that Medicaid would. Our other insurance companies wouldn't cover it either."
"...Because it's forty bucks a month on average for a pump, plus all the other goodies you have to get. The bags, if you were freezing the milk, I know, maybe 25 or 50 bags was like 12 bucks. I mean, I had to, but you know, it could be cheaper. I felt like with all that breast pump paraphernalia, they kind of got you where they want you. You need it. And they can charge you whatever the heck they want."
None of the families found breastfeeding the VLBW infant was easy. Prior experience seemed to help.
"He's my sixth child, so I felt like I knew it all; I was an experienced mother, it wasn't like a first baby, but it's a whole new ball game when they are premature. I had nursed all my children and was intent on nursing him, but it was really difficult. One thing I could say is just don't give up. He's healthy and nursing well still now, but that first while I was ready to give up. It was really difficult."
It was a disappointment to most focus group participants that they never achieved full and easy breastfeeding at the breast despite months of effort.
"I still had to pump, even after I brought him home, and I would nurse him as much as he would tolerate, and then bottle feed and we went through this for a long time. The pumping and everything was just terrible. It was really hard."
"So when I took him home, went home about five weeks after he was born, he breastfed for maybe another three weeks, but not on a regular basis and then he wouldn't have any food at all."
"I pumped for three months when she was in the hospital. When she came home, I tried it for about another two and a half weeks or so with breastfeeding. She was just really fighting it and I just said the heck with it and went to the bottle. And then I pumped for a little while after and then finally went over to formula--all formula. I just wasn't sleeping, it got to the point where it was like a self-defeating thing you know, they say that if you are stressed you won't have very good milk and of course you're stressed because you're not making milk."
"And you fight so hard to see your baby eat a certain volume that it gets real discouraging when you try to go from the bottle to the breast, because number one, you don't know exactly how much they're getting and there's always that little fear of the unknown. How much are they getting? And then, you know, number two, if he does start to drop any weight or anything like that. I think with preterm infants especially, because you fight so hard to get them to gain. Every ounce counts right?"
"I always felt worried about the bottles, from the very beginning. I pumped to make those bottles. I was religiously against formula, I don't know why, for the first year and then I saw the light of day. I kind of wish I had, probably, started the formula sooner, I think she would have gained more weight. I think I really did compromise, because I was working half time and I really don't think I produced enough milk that first year."
"I was committed to nurse, and I had nursed all my children, and I pumped from day one. He was three-weeks old before I ever got to hold him, and then it was just little bit of nursing, but let's not wear him out too much. So when he came home at four weeks, I had really only nursed him one time for a real feeding. The rest of the time it was like, just give him a little bit and then we'll ng (give a naso-gastric tube feeding) because we don't want him to get too tired, which was understandable, but then when I got home, there was no more ng, and it was like, you've got to nurse him, and he was too tired to nurse. He would nurse a little bit and would wear out on me."
"He would never breastfeed. He wasn't strong enough, and he would tire out and stop breathing if you tried to breastfeed him. It was too much work. So he was being tube fed for quite a lengthy time. I pumped for three months and then when I knew I was going to have to bring him home with all the whistles and bells, I kind of gave up on that and went to formula because I knew I would have to continue pumping while he was at home. And it took him 45 minutes to get an ounce down, so I knew if I didn't do something to alleviate the pressure, I was going to be up all the time--there wouldn't be any break at all. So I decided to switch to formula."
"I was so sick. It was very difficult for me to take that much energy to breastfeed him rather than make a bottle and give it to him. So I think I had a lot of guilt afterwards when I had to stop breastfeeding, there was so much guilt because the doctors were, 'Are you breast feeding?' That was the hard part. I think the doctors need to evaluate the situation that you're in, how healthy you are or aren't. I think they need to support you in the decision you make. Of course breast milk is always going to be better for the baby, but it's real difficult when you have a preemie coming home. It was my first. He was 3 lbs. and I was scared to death. Nobody was going to be here to take care of this kid except me."
"I wanted to get that bond in there. I knew this was going to be my last. (chance to nurse a baby). There just wasn't anything left."
"So, I didn't have to feel guilty, he already had four months of the milk and they helped reassure me that, you know, I'm not a bad person. I felt horrible, you know."
Some health professionals prescribe Reglan (metoclopramide) to enhance the mother's milk supply. This is a controversial treatment, and does little to deal with problems relating to the infant's feeding ability.
"One thing that I did was, I took the drugs and I got really depressed. It really was a big downer, and when I talked to Dr. ------ about it, and he said, 'oh that's one of the side effects.' So the whole thing was so awful. I had a critically ill child, and I'm trying to pump. That drug thing was a biggie. They were prescribing it right and left to people there, and I thought that's a major deal, because most of us probably were really depressed. So then I went on Zoloft and that was helpful too."
"I even tried going on the Reglan, and it just made me like, psychotic. I couldn't, all it made me want to do is sleep all the time, so that was like, not an option."
"I tried the supplemental nursing system on her because in the hospital we found that she would take a bottle fairly well, but she did not want to breastfeed very well. So they put the tubes on my boobs and the whole bit and that got to be a real drag at home, getting up every couple of hours and trying to rig that whole thing up while she is crying and trying to do the nursing on top of it."
"The thing again that was frustrating was that supplemental nursing system that I tried. I just found that it didn't work well at all at home to do that. I think if I would do things over again I probably wouldn't have even tried it because it was just such a bummer."
"It was nice at the hospital because the nurses were there and you do have the extra hands, but when I'm at home and have one child tugging at my arm and trying to get a syringe to tape to my breast, it just wasn't going to happen every three hours."
"You know, he was born in the morning and by dinner time there was a breast pump in my room and I'm looking at the thing going, 'Oh my God, I can't do this.' It wasn't the way I had pictured this whole thing to be. And immediately there's a nurse in there to tell me how to do it. It was kind of an informal lesson, but she herself had had a baby fairly recently, within a year or two and that made me feel better. I felt really, you know, okay, useful by having that job to do, it kind of occupied me. That first day or two you're really, we didnít have any bed rest or any warning. I was still just kind of really in shock. Breastfeeding the first day or two was like, kind of just this much out and they're saying, 'Good work, way to go.' Everyone was really supportive all the way through."
"One thing I found was that the football hold is better for a preemie and none of the nurses told me that but I experimented, and you know, they're so tiny, and their little head is so tiny and you have to support their little head, and when you're doing like this, their head is in the cradle of your arm. So that might be helpful to someone who wants to breastfeed about that positioning."
"This is my second son. I knew how to breastfeed, but I didn't know how to take a baby from a bottle and put him to the breast. And when I asked and I asked everybody, they all shrugged their shoulders. They didn't know. I also didn't get a lot of support in the hospital. I was actually even told to put the baby back into the isolette because he was getting cold. I'd taken his temp and he was not cold. She was I felt, interfering with me bonding, and trying to breastfeed with my son. They were giving a lot of lip service to breastfeeding in the hospital, but really not encouraging it."
For whatever reason, transitioning fully to the breast was a rare occurrence in the focus groups that we held. Only three mother-infant dyads had established full breastfeeding at the breast. Even experienced breastfeeding mothers who pumped breast milk for months after discharge had difficulties helping their infants to transition from the bottle to the breast.
"I don't know if, you always hear of nipple confusion, if it was always easier for him to get the bottle and that's why he never tried hard on the nipple or if I just didn't produce enough. Now he maybe gets breastfed twice a day. He's not very tolerant of it, and now he's getting to the point where he'll latch on and just immediately pull off. It looks like he's holding out, as if, 'I know there's something easier coming.' And I give in. He cries. I just don't want him to get upset. I felt guilty about it. That's probably it... I guess there's a million other things to worry about too, but that's the biggest issue."
"I was nursing, formula, combining the two... and slowly the formula is winning. I was, with my first one you know, 'shame on anybody who used formula.' His weight gain... Though he's seven months, I'm really pretending he's only four. And he's still not up there with the four month olds."
The birth of a VLBW infant is highly stressful to families. Sometimes the effort to breastfeed seems to add to that stress considerably.
"I'd try the breast and couldn't get it, and then I'd give him breast milk out of the bottle, and I worked at it for three weeks until he finally latched on. I had problems letting down and producing milk because of the stress."
"I just didn't have any milk period. I think that really stressed me out the most because I really wanted to breastfeed my baby, and the fact that there wasn't any milk was stressful. I don't know why I didn't have any."
"Even when I did transfer to full breastfeeding and he was doing well, he was gaining modest continuous weight gains. Even then, I was met with, even by my own pediatrician whom I had a good relationship with, surprise. And I felt almost suspicion because he'd never had anybody in his practice transfer from bottle to breast feeding. That's what they want you to do, breast is best, go for it. But, how to do it, oh, we don't know, here's a bottle."
"And I felt that the lactation nurses were just really wonderful. I think, one hard thing for me was after leaving the hospital there really wasn't, you know they couldn't come to my house and it was really hard for me to come there. I did go in once, but I think the sort of after-support, something more would have been helpful. You know, I could have paid for it, but just kind of accessing it was the issue for me."
Experiences here were highly variable. Some mothers found that lay breastfeeding support counselors where not familiar with the issues of VLBW infants. Others were hesitant to use this resource because their infants were taking bottles, and the groups were known for disapproval of bottles. Support from other mothers of VLBW infants was welcome.
"Actually, I kind of stayed away from the La Leche people because I heard they were like breastfeeding Nazis, the breast feeding Gestapo. Like if you weren't breastfeeding your kid you were a horrible human being and all this stuff, right. So, I just wanted to stay away from that. I didn't need the extra pressure."
"It helped me because you would meet other moms in the pump room and you'd be sitting there pumping out your pitiful little like 2ccs, and there would be other women in the same boat you were in and you could kind of talk about it and that was actually very helpful."