Breastfeeding With IGT – Heartbreaking but Fulfilling

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What is IGT?

IGT stands for insufficient glandular tissue and is a condition where a woman’s breasts have not got enough tissue to produce a full milk supply to sustain her baby. It is difficult to diagnose as there are so many other factors which might cause low milk supply. Breastfeeding with IGT is not necessarily impossible but it can be extremely challenging both physically and mentally. You can get more information here on the Kellymom website.

Breastfeeding Dylan

I never managed to get to a full supply with Dylan. I had lots of complications during my pregnancy and birth, plus Dylan was premature. All of these factors can be a cause of low milk supply. I took galactagogues, baked lactation cookies, pumped like crazy, and fed Dylan at every opportunity but my milk supply was just never enough.

I felt like a total failure. Breastfeeding is the most natural thing in the world and I couldn’t make enough milk to feed my baby. I was devastated and every bottle of formula I had to give just reminded me all over again that I wasn’t able to feed my own baby. I hated having to give formula when I was out as I felt that people must be judging me and thinking that I hadn’t tried hard enough to breastfeed. I don’t know why I thought that, as I would never, ever think that about someone else but my hormones were crazy and I was so upset by the whole situation. I hated having to explain to others that I had to top up Dylan just for them to tell me to eat more porridge or avoid peppermint tea. Believe me, if porridge could have fixed my milk supply I’d have had enough milk to feed 6 babies!

I had a feeling there was something more going on, as I literally was trying everything, and nothing seemed to help even a little bit. I started reading everything I could about low milk supply. When I read about IGT, I felt like it described me perfectly but, because of all of the other complications, the doctors and infant feeding specialists I saw thought that IGT was unlikely and I was never able to find anyone to take my concerns seriously.

After Dylan started solids we were able to gradually reduce the amount of formula he had as he took more food. By the time he was around 9 months, we were able to get to the point of solely breastfeeding. I ended up feeding Dylan until he was 18 months old when he decided to stop of his own accord, probably due to my milk changing due to me becoming pregnant again. It was the best feeling being able to comfort my baby through feeding, even if I wasn’t able to exclusively breastfeed and I’m so grateful we were able to continue for so long.

Pregnancy Number 2

Early on in our second pregnancy, we decided to visit a lactation consultant. I hoped it would either put my mind at rest or help me come up with a plan to manage low milk supply with this baby. I was able to find a lactation consultant – Arielle – who had recently moved from the states to Aberdeenshire, so we booked a consultation with her.

Before our first meeting, I filled out a detailed questionnaire giving information about my previous pregnancy, birth, health records etc. During the consultation, we discussed my worries about having low milk supply with my next baby and she actually looked at my boobs. With all the problems I had last time, nobody had ever done this before! Although many professionals had seen me breastfeed, none of them had looked at my breasts without a baby attached. Arielle said right away that she thought I had markers for IGT. I was so relieved that someone was finally listening to me and she reassured me that together we would come up with a plan to help me provide our next baby with as much breastmilk as possible.

The first step was to get some blood tests to rule out other causes of low supply. Arielle wrote a letter which I passed on to my GP and she agreed to run some tests. The results showed that I had low prolactin levels for someone in their second trimester of pregnancy.

I had mixed feelings when I found out the results. On the one hand I was sad that I would definitely never have a normal breastfeeding experience with future children, but on the other hand I felt overwhelming relief that I hadn’t been doing something wrong the first time – I had actually been breastfeeding with IGT. I wasn’t going mad in thinking I had this rare condition. My breasts were never going to work, no matter how much porridge I’d eaten or how unstressed I’d been.

Another Premature Birth

Harris was born 9 weeks early, so unfortunately I had some of the same issued I’d had with Dylan. He wasn’t able to feed right away and I wasn’t able to hold him in the way most people can hold their newborns. Luckily this time I was prepared and I started following Arielle’s suggestions as soon as I could.

Establishing my Supply

Within an hour of Harris being born, before I was able to see him in the neonatal unit, I started doing some nipple stimulation. I got set up with a pump and began pumping 10 times a day. Each time I pumped I would also hand express for 5-10 minutes and found that I got as much, if not more, through hand expressing as I did using the pump. I also began taking goats rue and alfalfa.

I kept up my pumping routine until Harris was well enough to start trying to feed directly. My volumes were gradually increasing but were nowhere close to the volumes I saw other women producing in the expressing room. It was so demoralising seeing the full bottles others were pumping and to hear so many women complaining about having an oversupply. I know having an oversupply comes with its own challenges but there’s nothing worse than hearing people moan about having too much milk when you aren’t able to produce enough for your baby. Especially in a neonatal unit where there is so much focus on how essential breastmilk is for premature babies.

As when Dylan was in the unit, we used donor breastmilk to make up the difference between what Harris required and what I was making. There were about 2 days when I actually made the full amount he needed and I was so happy!

Support on the Neonatal Unit

I didn’t really want to mention to the neonatal staff that I would be breastfeeding with IGT to begin with. I felt almost embarrassed that my body was failing again after it had already failed to carry both of my babies to term. (I had a couple of people light-heartedly say “oh you really don’t like carrying babies to term do you?!” when they found out Harris was my second premmie. I know nothing was meant by it but this comment actually really upset me.) I’m glad I did tell them as most of the staff were so supportive of my efforts to breastfeed and were genuinely interested in finding out more.

One lady from the infant feeding team, Kate, remembered me from my time in the unit with Dylan and she was just brilliant this time round as well. She’d spent lots of time helping me with Dylan and when I told her about IGT she went home and read up on it so she was able to better support me with Harris. Lots of the nurses were interested to hear about breastfeeding with IGT as they hadn’t heard about it before.

I only had one negative experience with an unsupportive staff member, someone from the infant feeding team. This lady was very patronising and condescending. When I told her that I had IGT and would be unlikely to get a full milk supply, she dismissed me and said that barely any women are unable to make enough milk to feed their babies.

While this may be true, it wasn’t for her to say that I wasn’t one of those women, especially as I’d told her I’d been seeing a lactation consultant. She hadn’t heard of IGT and when I told her that it stood for insufficient glandular tissue she just looked at my chest and said dismissively “oh, that just means you’ve got small breasts. You’ll have to feed more often”. Actually no, that’s not what it means at all. Yes, I happen to have small breasts, but that has nothing to do with my ability to produce milk. Plenty of people with smaller breasts are able to maintain a full supply and people with larger breasts can suffer from IGT. Suffice to say I avoided that lady as much as possible for the rest of our time in the unit.

Breastfeeding Harris

Harris started showing interest in my breasts at just a couple of weeks old but wasn’t strong enough to actually feed until he was around 4 weeks old. I wanted to try and avoid a nipple shield this time round as I’d had such trouble weaning Dylan off it, but just as before, Harris wasn’t able to feed without one. The shield stimulates the suck reflex so reminds baby to keep sucking and swallowing. They are often recommended for premature babies. Without the nipple shield, Harris would suck once and then fall asleep.

Once we started properly trying to breastfeed using the shield, I adjusted my pumping routine so that I would attempt a breastfeed before pumping. Depending on how the breastfeed attempt went, Harris would have somewhere between half and all of his usual volume of milk through his tube. This meant that I was only pumping 8 times a day but meant that my breasts were as full as possible when it came to a feed so Harris had the best chance of getting milk. I was really pleased to have Arielle’s advice at this point as I was getting differing advice from various nurses, some of whom I don’t think actually had any specific feeding training.

Unfortunately due to Covid, I wasn’t able to meet with Arielle but she was great at responding to my many messages and helped me out so much. She recommended that I buy a Spectra S1 pump and she showed me how to measure my breasts for properly fitting pump shields. It turned out I’d been using totally the wrong size with Dylan which no doubt added to my supply issues.

We introduced a bottle in the hospital this time round as we knew I’d unlikely be able to get a full supply. We ended up doing this earlier than I would have liked because of Covid. We didn’t want Harris in hospital for a minute longer than necessary as there were rumours of further visiting restrictions and of course travelling back and forth from the hospital was opening us up to risk of infection. I don’t think introducing the bottle early made any actual difference to our feeding journey, all of my concerns about the bottle were just in my head.

After around a week of attempting breastfeeds and bottles, Harris had his tube removed so he would be solely relying on breast and bottle for his milk. This was a really big step and I was so nervous. At the point Kate suggested that we take out Harris’ tube, I thought we’d have at least another week with the tube as I didn’t feel like Harris was feeding particularly well. Kate thought we should try and push him as she knew how much I wanted to get home and how much I was missing Dylan. The tube was removed on the Friday afternoon and by Sunday night I ended up having a meltdown because Harris had lost weight and was completely refusing to take a bottle.

I never feel a let down when breastfeeding so I wasn’t sure he was getting anything from me at all as he wasn’t swallowing consistently. I thought he must be starving. The nurse on shift was so lovely when I couldn’t stop sobbing, which obviously made me cry even more. I’d been staying in the unit until around 10.30pm each night to make sure I was there for as many feeds as possible and returning by 7.30am. Looking back, I was totally exhausted; which she could see. She persuaded me to leave early and promised me that she’d put Harris’ tube back in if he refused another bottle. I was just so worried that he was hungry and as much as I wanted to get us both home soon, I didn’t want him going hungry.

When I phoned the unit first thing on Monday morning, I was elated to hear that Harris has taken 3 bottles in the night. It turned out that he liked the milk warmer than they usually made it. The nurse only found out because she sterilised the bottle right before feeding him so it was hot enough to heat the milk slightly. On Monday night I was allowed a room on the unit with Harris and by Tuesday afternoon we were both home. I couldn’t believe how quickly things had turned round.

Back at Home

Once Harris was home, I continued pumping and topping up after every feed. As well as using the bottle for top ups, I also used an SNS (Supplemental Nursing System) as much as possible so I could feed the top up at the breast. This also helps with milk production as there is more stimulation. It wasn’t easy, especially with a toddler waking multiple times a night on top of my 3 hourly triple feeding sessions. Mik was amazing and dealt with all of Dylan’s wakes, even though he was working all week. I wouldn’t have been able to do it without him.

Harris became better at breastfeeding and we were gradually able to cut out bottle top ups. We have a baby scales at home so weighed Harris every day or 2 to make sure he was continuing to gain. If he gained well for 4 or 5 days, we cut out one of his 60ml bottles. Each time we cut out a bottle, I cut out the pumping sessions so I was able to free up time to spend with Dylan. It got to the point where he was down to 2 x 60ml bottles a day which is better than I’d ever hoped for. When I tried to drop further than this, Harris stopped gaining weight so at this point I stopped pumping altogether as I knew I’d maxed out my supply. Harris was around three months old by this point.

Harris is now 9 months old and is enjoying solids as well as a combination of breastmilk and formula. We still keep an eye on his weight, usually once or twice a week, but he’s definitely turned a corner since he started on solids and we’ve been able to reduce the amount of formula he is having as he’s gaining weight so well and not looking for as much milk.

Making the Best of it

For me, the worst part of breastfeeding with IGT is the sadness of not being able to have the normal breastfeeding experience I’d dreamed of. I hate the fact that on top of not being able to keep my babies safe inside until they were ready to be born, I then failed them even more by not being able to feed them exclusively from my broken breasts. There’s also the practical side of it. Having to make up bottles, sterlise bottles, make sure I’ve got enough formula if we’re out and about. This time round I also felt so guilty about all the pumping I had to do to establish my supply as I had barely any time for Dylan. It was worth it in the long run though as now I’m able to go out and about with Dylan and Harris during the day without having to worry about formula.

Breastfeeding with IGT is a challenge but for me it’s been worth it. I love the amazing bond I have with my boys and every day I get to feed them is a bonus. If you are struggling with low milk supply and think you may be affected by IGT, I would suggest getting hold of a copy of Making More Milk. It’s got so much information which can help you determine what might be causing low supply. I’d also highly recommend speaking to a lactation consultant who has the skills and knowledge to support you properly. Not being able to feed your baby as you’d planned is heart breaking but I’ve found that having an expert to listen to me and help me make decisions has been invaluable and made me feel so much better about breastfeeding this time around. A big thank you to Arielle for all of her support!

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