Interview 19

Age at interview: 40

Brief Outline: Breastfed baby with Down's Syndrome. Jaundice. Slow weight gain led to mixed formula and breastfeeding, possibly due to heart problem that required surgery at 4 months. Baby constipated on formula.

Background: At the time of interview, this 40 year old, White British woman had a 5 month old daughter whom she had breastfed for 3 months. A Human Resources Manager, she was married to a lecturer.

More about me...

Reading and talking about breastfeeding beforehand can make it seem much more complicated than it really is, according to this woman, who decided to breastfeed if she could but not get upset if she couldn't. She described the first feed as amazing and a bit like riding a bike - once you've done it properly, you know you can do it again - which gave her a lot of confidence. She also feels that the first night, when they were together, was important for bonding with her baby. She thought her baby was the most beautiful thing that she had ever seen. For the next few days, after that initial feed, the baby's blood sugar levels and temperature were low so she was formula fed. It was a huge shock to this woman and her husband when they found out, on the first morning, that their daughter had Down's Syndrome because they'd had no previous indication at all. Family and friends were immensely supportive and let them know that Lily would be no less loved. This was a great comfort to them as they adjusted to what it meant to have a baby, Lily, who happened to have Down's Syndrome. Family support was again important, in a practical sense, when they moved house two days after bringing Lily home. Slow weight gain led to Lily eventually being switched to formula feeding which caused her constipation and forced her mother into a regimented routine that she had not experienced with demand breastfeeding. She regrets the switch, especially in light of the subsequent operations that her daughter needed for congenital heart problems.
 

It was easier once she knew that her baby definitely had Down's Syndrome but that does not define...

But I think really I was just praying that she didn't have Down's, I just thought, 'Please don't let her have Down's, please don't let her have Down's'. When the doctors came into the room, on the Friday, I knew from their expressions that I knew what the news was going to be, but in some ways it was actually a little bit easier then, because then we knew, then it was absolute, then it wasn't the unknown, that was the situation. And we did have the most fantastic sort of support from family, friends, no one made my husband or I feel that Lily would be any less accepted or any less loved, and so that made a colossal difference. The nurses again that nursed us were very supportive of the breastfeeding, so I think particularly because children with Down's tend to have a lower immunity, a lower immune system, breastfeeding's, you know, almost more important to try and get something and they can also have intestinal problems, so again the kind of compatibility of the breastmilk, so they really, you know, literally sat for a few days they sat by me and just helped me with the breastfeeding, quite, you know, physically just to do it but she had to be topped up on formula.

So those were the physical reasons for breastfeeding, did anybody ever mention any emotional or bonding type reasons for breastfeeding?

Prior to Lily's birth I'd only been, I had understood from what I'd read and what I've been told that there is that kind of bond between the mother and the child when you're breastfeeding which seems totally natural and I was looking forward to that, and I think that the hospital were particularly keen that we bonded because I think they felt that there was a risk that when we, when we knew that Lily had Down's we might reject Lily, so I felt that because one of the issues on the night she was born was they kept popping in and out and were obviously debating whether she needed to go into the intensive care unit, into an incubator because of her blood sugar and body temperature but obviously felt that it was better for her to be with me. Now at the time I was quite kind of, 'Well if it's better for her to be away from me I'm not worried, you know, I'd rather what, what's best for her' but I think I realise now that again that was the, part of the judgement call for them was, if she stays with mum that bonding is more likely to take place, and when they do find out, perhaps rejection is less likely, I mean that's purely supposition on my part but that's what I think.

But in retrospect are you grateful for that?

Yes I am, yes, yeah definitely. Because when I remember lying in the bed looking at Lily and she was in the little plastic cot, and she had these, like little beady eyes and the little legs were circling away and I just thought she was the most beautiful thing I'd ever seen. When they told us that she had, or she possibly had Down's and I was trying to reconcile that I remember thinking, 'Last night I thought she was utterly beautiful, so what's changed?' Do you know what I mean what, what has changed? It's just my preconceptions, it's my prejudices that actually, you know, that's what could change this issue she isn't any less beautiful today, it's just that I'm worried for the future, so that helped, didn't it Lil?

I think the interventions were sometimes, feeling overwhelmed with the interventions came afterwards, because there were lots of times when I had to go to hospital with Lily and that can be quite wearing, it also means it's quite difficult to get into a routine because you attempt some kind of routine and then, that, you know, going into hospital, having to see, we've had to see quite a lot of clinicians, we've had to see paediatrician's, physiotherapist's, speech and lan

She breastfed her baby with Down's Syndrome until doctor's recommended infant formula for slow...

I think one of the key things that helped me when I first had Lily was the nurses that nursed me were incredibly supportive and the first thing we really did after Lily was born was we breastfed. So they put Lily directly onto my breast, they almost did it for me because I'd had a caesarean and I had no real feeling so I couldn't move the lower part of my body, but it was an amazing feeling. She would only have been twenty minutes old something like that, maybe thirty minutes old I can't remember exactly, but I know the pictures of her, her hair's still damp and the fact that she could do it and we could do it was really powerful for me it really meant a lot, and that was important because in the next intervening few days we couldn't actually breastfeed because her blood sugar was too low, so they were desperately trying to get food into her, but because she'd done it once I felt fairly confident that we could go back and try and do it again. We did try and do it but I knew that I couldn't actually feed her, it wasn't going to be enough, in the first sort of two or three days, but certainly that kind of experience and just the practical thing where one of the nurses showed me literally by pulling her lower lip back that got her into the kind of latching position, and then once she did it, I thought 'Oh that's how it feels' you know, I kind of knew what it meant then and sort of demystified it for me.

Did anyone explain to you why her blood sugar and her temperature were low?

When she was first born it was evident that she was quite small, she was five pounds seven ounces. She was more or less full term, she was thirty-eight weeks and I hadn't gone into labour but what had happened was, I had a midwife check. My midwife came round, who happens to be my sister-in-law and as we listened to Lily's heartbeat, I had just literally laid down on the sofa, it sounded really slow and what the midwife said to me was, 'Don't panic, because often if you lie down you contract your tummy muscles, you give the baby a bit of a squeeze, it can lower their heart rate so don't worry, but we need to follow this up'. So I went into hospital and they put me on the monitor and they weren't totally happy with Lily's heart rate, it was actually too static. They wanted more of a variation. So I went in the following day and they put me on the monitor again and it became evident that Lily's heart rate was dropping for no apparent reason and on some occasions it would drop very low for quite a long period of time. So they felt that they couldn't risk her being inside of me any longer and that they had to get her out, so although they tried to induce me it had absolutely no effect whatsoever so I had an emergency caesarean, so I didn't do labour at all.

So when she was born she was small and that was a surprise because I was quite large and up until then there had been no indication that she was smaller than they would expect for a baby of her term. So it was a surprise and I also knew from the previous scans they had done, in the kind of previous twenty-four hours that I didn't have a lot of amniotic fluid which was another concern for them, which was another reason for the caesarean. When Lily was passed to me, I remember looking at her and obviously kind of being quite overwhelmed with that kind of moment, but I thought at the time 'oh are her eyes okay?' Her eyes had looked a little different to me, but I didn't know what a brand new baby looked like and it was a baby who hadn't done labour so I thought that basically she'd come from nothing into this great big wide world and we went literally straight from that, we did some breastfeeding. They took her body temperature, they took her blood sugar, they said to me 'It's very low, we need to get some food inside her, you can persevere with breastf

The 'nurses' helped her breastfeed straight after a caesarean section and even though her baby...

I think one of the key things that I had, that helped me when I first had Lily was the nurses that nursed me were incredibly supportive and the first thing we really did after Lily was born was we breastfed, so they put me, they put Lily directly onto my breast, they almost did it for me because I'd had a caesarean and I had no real feeling so I couldn't really move, I couldn't move the lower part of my body and, but it was an amazing feeling she would only have been twenty minutes old something like that, maybe thirty minutes old I can't remember exactly, but I know the pictures of her hair's still damp and, and, and the fact that she's sort of, could do it and we could do it was really powerful for me it really meant a lot, and that was important because in the next intervening few days we couldn't actually breastfeed because her body sugar was too low, so they were desperately trying to get food into her, but because she'd done it once I felt fairly confident that we could go back and try and do it again. and we did try and do it but I knew that I couldn't actually feed her, it wasn't going to be enough, in the, the first sort of two or three days, but certainly that kind of experience and, and just the practical thing where one of the nurses showed me literally by pulling her lower lip back that got into the kind of latching position, and then once she did it, I thought, 'Oh that, that's how it feels' you know, I kind of knew what it meant then and sort of demystified it for me.

Can you describe that feeling of a good latch?

I think for me it was the fact that she seemed able to, she seemed to have enough of the nipple in her mouth and she seemed to be able to suck so that she, if you like, didn't seem to be wasting any of her energy, she seemed to be sucking and getting milk, sucking and getting milk, sucking getting milk, and she seemed to quite comfortable, so it was almost like there was this sort of, like a seal, you know a kind of a seal on my nipple and, and as I say having sort of literally the nurse, you know, showed me that pull Lily's lip down for me, and having done that a few times it then became quite natural for the pair of us really, so.

A bit like learning to ride a bike?

Yes absolutely I mean kind of once we'd done it two or three times I thought 'that's it, that's what you do' and then Lily seemed to also understand what she had to do I mean, I was very lucky with Lily she seemed to instinctively know what to do, she didn't seem to have any problems latching on, the initial difficulty was really just about the fact that they needed to get food inside her, because she was little and her blood sugar was low, her body temperature was low as a consequence of the blood sugar, we just had to get some food inside her so we had to feed her, feed her formula feed for the first few days.

So did you need much help from day three onwards to, to get to that stage of exclusively feeding?

No, not really, no I didn't really need much help, because I think Lily having gotten over her initial problems just energy really, just seemed to know what to do, she just instinctively knew what to do, and, you know, I was in hospital and I guess I was, because I was in hospital I had nothing else to do I mean I wasn't at home, I wasn't being sort of distracted by anything else, so I was able just to sit and feed her and she really fed virtually all the time. I don't know that she was getting that much milk necessarily but we were just doing the kind of the, the breastfeeding and that kind of thing, so that by the time we came out of hospital I was quite confident that I could breastfeed her, and I guess having been in hospital for that amount of

Her baby was not gaining enough weight so she had to set an alarm to wake them both to feed in...

What sort of arrangements did you make during the night?

Again I had to wake her up, I mean the hardest thing for me was the fact that I had to wake her up, again because it was so contrary to what I'd, you know, everything I'd been led to believe prior to giving [laughs] birth was that I would be up all night with this screaming baby I'm actually [laughs] Lily as evident here, you know, can sleep beautifully and she used to sleep through the night so I had to wake up, I had to sort of, I didn't want to set an alarm because I was kind of conscious of my husband as well, I didn't want to kind of wake him up if that could be avoided, so internally I sort of set my own little alarm, but I mean that wasn't particularly successful because you don't really, you lie there and worry that you're going to sleep through your own little alarm, so in the end I just set my little alarm, it'd go off at two o'clock in the morning, I would get up, take, pick her out of the Moses basket, take her into the nursery, 'cause she Lily sleeps in our bedroom in a Moses basket with us, so I would take Lily into the nursery, just sit down, and breastfeed. Very low key, no lights, kind of soft lights, try and not wake her up too much and change the nappy first of all so get the kind of disruptive bit of the way, and then breastfeed for as long as she wanted to and then put her back down, and again I didn't really sort of talk to her, I'd try to keep things quite kind of calm in order not to try and excite her so that hopefully she wouldn't wake up too much and therefore she would go back down, which she did in fairness to her, she always went down. So I generally would feed her sort of at ten, then feed again at two in the morning, and then feed her again at six in the morning, and when my husband got up so that's how we sort of did it. But it was me waking Lily up rather than Lily waking me up to do that so that was kind of unexpected for me.

How long did you continue that routine?

I continued it until, I did it for, certainly for three months whilst we were breastfeeding, at the time we then changed over sort of about, between three and four months I think we decided that she was getting quite a bit of formula so I was comfortable as she was sleeping to let her sleep through the night, when she started to fall off the charts I then sort of thought, 'Oh you know should I be waking her up and feeding her?' which I tried to do but she really wasn't interested, she just didn't want really to feed at that time, so what I did was I just made sure that we, the requisite number of feeds in, if you like, daytime so between sort of six and midnight really, and that she went for six hours at night, which she's always done quite happily and has done, and does so now really. So she's very good in that respect, aren't you Lily?