By Sarah Lockie
Before Euan was born, I had a vague idea that feeding tubes existed – I think I’d seen one in an article in Woman’s Day about a sick kid, and another in an anti-smoking ad – but it’s not something you envisage your own child needing. It’s not a part of the day-dreamy anticipation of what life with your baby will look like.
But not much about being the mum of an extremely prem baby is.
Euan was born at 27 weeks on the dot, by emergency C-section due to sudden and severe pre-eclampsia. I saw him for a few seconds after delivery, long enough to see he was a boy, before they popped him on an admission bed, stabilised him, and took him off to the neonatal intensive care unit. I know they took me to see him that night, but I don’t remember it. I was sick, pumped full of a cocktail of drugs, and psychologically numb.
At some point in the hours that followed his delivery, a midwife came into my room and announced, “When you’re ready let me know, and we’ll start hand expressing”. She was brisk and distant, and answered my confused questions with “lactation is induced by removal of the placental hormones, you can lactate”. I didn’t like her, but I’m forever grateful she presented it as a fait accompli – I needed someone else to be making the decisions at that point. And so we started, first into 1ml syringes, then little pill cups, then I moved onto a pump. Each expression collected and numbered so it could be slowly, painstakingly delivered in the same order it had been expressed, down a tube to the stomach of my tiny, tiny baby in intensive care.
I went home and pumped, and cried, and he stayed in NICU. There are rules about how to establish and maintain supply for exclusive pumping – every three hours during the day, every four hours overnight with at least one pumping session between 1am and 3am when prolactin levels are highest. I followed the rules slavishly, and over the next eight weeks or so my supply stabilised at about 700ml per day. Enough for my tiny, tiny baby who was born weighing 720g – and then some. Euan was never fed anything but expressed breast milk down his nasogastric tube. They added a fortifier to add calories, but the base was always breast milk.
Euan had a number of acute challenges in his first few months, but the major ongoing issues were his lungs. He needed extra oxygen and extra pressure, and removal of either for even a minute was dangerous.
While he battled his severe chronic lung disease, I learned about how developmentally babies (or in most cases, foetuses) get to the point of being able to breast feed at around 40 weeks gestation. At 34 weeks babies learn to co-ordinate suck, swallow, and breath. Before that point, any kind of suck feeding is dangerous in case they aspirate the milk into their tiny lungs, so all babies born before 34 weeks need to be fed via tube. Around their term date, babies have a critical period for developing the sucking response. If they are not exposed to a nipple in that time they do not learn to suck. Optimally, oral feeding needs to be established in the 36-42 week window.
Our problem was that Euan still needed quite a lot of positive pressure to breathe during this six week window, so he was still being exclusively tube fed. The doctors were worried that the increased pressure from his breathing machine would result in milk being blown into his lungs, which can result in aspiration pneumonia. Not a great outcome for a baby already struggling to breathe, and not surprisingly the doctors were reluctant for us to try. Lots of ‘niceties’ of parenthood go out the window in deference to survival in the NICU, and it looked likely that breastfeeding my son would be one of them.
But trying to breastfeed was important to me, so I pushed and pushed, and the doctors agreed to let me try on an empty breast. The first attempt was just before Christmas when Euan was about 37 weeks gestation, and lasted only a few minutes. It was clear Euan wasn’t up to the task, he became distressed and couldn’t maintain his blood oxygen levels. Subsequent sessions went better; he could latch for a minute or two and I hoped that with luck we might eventually get somewhere.
Over the next few months we persevered with both breast and bottle feeding but he never had the strength to take full feeds, and as they weaned his oxygen and pressure support down he did worse and worse. The extra effort of breathing without pressure support wore him out to the point where suck feeds were too hard. He also had severe reflux and vomiting, so he often needed to be fed more than once as he would vomit the first feed, and he really didn’t have the strength to do it twice.
He came home after 169 days – almost six months – in hospital. He was on oxygen, needing constant blood oxygen monitoring and still with a nasogastric tube. I learned to measure, insert and tape the tube.
Putting a nasogastric tube into your own screaming child is shit. Everyone is crying – but you cope because there aren’t any other options.
Not long after coming home, Euan developed a hyperactive gag reflex. Every time he sucked he gagged, so we had to abandon all suck feeds. The gag protects the airways, and in a baby with vulnerable airways it can actually be seen as an adaptive response, but it clearly works against oral feeding. Our goal became to ‘keep the oral feeding window open’ by spoon-feeding millilitre amounts of breast milk before each tube feed to reinforce the idea that flavour = satiety. He vomited nearly every tube feed, often the whole or nearly the whole amount, meaning a re-feed. The process could take 90 minutes all up, six times a day.
At one point I told our wonderful maternal and child health nurse, “sometimes when I’ve finished pumping I feel like I should just dump the milk over my head, it’d be quicker and easier than tube feeding it and then having it vomited on me”.
Yes, through all of this I was still pumping enough to feed him exclusively on breast milk. Mad, I know. Breast milk has around 21 calories per fluid ounce, as does normal strength formula (I don’t know why we use the US measurements in Australia, but we do). Because of Euan’s extra energy requirements he needed more calories per ounce to thrive. So on dietetics advice, we added formula powder to the expressed breast milk to make sure his energy needs were met. He always skirted the bottom of the growth charts, which makes doctors nervous.
As the months wore on his gag subsided again, and one day I noticed him sucking pear puree off his fingers while we were doing messy food play. Babies with an oral aversion or reduced oral stimulation are at risk of developing generalised sensory issues which can lead to aversions to specific food textures later on. One way to combat this is through messy food play, which is exactly what it sounds like – squishing bananas, smushing purees, smearing yoghurt. But omg, HE WAS SUCKING!
We reintroduced a bottle before each tube feed. His oxygen requirements had also come down and his breathing was markedly improved. All signs pointed to him being ready to take oral feeds. But he would only take a little from the bottle and then refuse, and we would tube feed the rest. He had become tube dependent.
Tube dependency occurs when there’s a disassociation between the feeling of hunger and knowing that eating can fix it. It’s often coupled with trauma around oral stimulation – common in NICU babies. It leads to babies or children refusing to eat even in the face of extreme hunger, so caregivers resort to tube feeds to sustain life, but this also sustains the dependency on the tube.
There are various methods to transition children from tube to oral feeding, but best practice involves a multidisciplinary team of paediatricians, psychologists, gastroenterologists, and speech pathologists working together to monitor readiness of both parents and child to transition from tube feeding. There is only one facility in Australia that does this as a dedicated inpatient service, a private clinic in Adelaide. We’re in Melbourne, and getting support was a massive point of frustration for us, as we repeatedly ran up against outdated thinking and under-resourced facilities in our attempts to remove Euan’s tube.
Tubes go in as life saving measures, but no one is interested in helping you take them out again when they’re no longer needed.
A home based tube wean is extremely stressful, for both parents and kids, as it involves deliberately starving your child until they start eating. The first two attempts, Euan’s will was stronger than our nerve, and we went back to tube feeding. Evidence suggests that the more times you bail out on a wean, the harder the next attempt becomes, because the child learns all it has to do is keep refusing to eat and things will go back to “normal”. Thankfully, we managed on our third attempt at home to establish oral feeding and avoided the trip to Adelaide. I say we, but I think what really happened is that Euan decided he was ready. He will not be pushed, that kid.
After 13 months of tube feeding he was taking bottles. Of formula . I stopped pumping at the same time his tube came out, after 13 months. My goal for providing him with breast milk had been the 1st of December – the official end of winter virus season. We had been told that if he caught a respiratory infection in his first winter he would be back in intensive care as his lungs wouldn’t be able to cope. My goal was to protect him through the dangerous part of the year with breast milk, and I did it, but boy was I done with pumping by then.
He didn’t get sick through the winter season, but we also put the strict NICU protocols in place around who could come into our home, and under what circumstances. Sanitizing hands at the door. No small children, which meant he didn’t meet his cousins until his first birthday. It was hard at the time, but now they are thick as thieves. No public places, we just didn’t leave the house – which when you’ve got to take an oxygen cylinder and an oximeter with you, as well as all the normal baby stuff, is not that big a sacrifice. I remember the first time I took him to Coles in the baby carrier, he must have been at least one, it felt so momentous. Of course the exception to this was the hospital, we were there weekly for about the first six months after he came home, seeing his various specialists. It’s hard to get the balance right between being appropriately wary of infection, and a nut job. When the door of the lift you’ve been waiting for opens and someone is coughing, do you refuse to get in? Yes, and then feel bad about the possibility you’ve made someone else feel uncomfortable. We made sure everyone who visited was vaccinated and well, and hadn’t recently been in contact with sick people. Thankfully, everyone in our circle was very understanding and conscientious of our situation.
So it might not have been the breast milk that kept him well, but he’s two and half now, with no hospital readmissions – which is actually kind of a big deal. The breast milk can’t have hurt, at least.
In the first few days of our final tube wean, when they whole thing felt falteringly, fragilely precarious, I came across this photo essay: https://themighty.com/2015/10/powerful-photos-of-babies-being-tube-fed/ and I realised we had no photos of Euan receiving a tube feed. None. The article was posted by our wonderful speech pathologist and feeding therapist under the heading “Tube feeds are feeds too!” Perhaps it was the perspective of almost being free of the damn thing that gave me the space to view it differently, and I was sad we hadn’t documented it at all. Of course, the reality is that tube feeding while trying to maintain oral stimulation is time-consuming, difficult, messy, emotionally draining, and occurs in the context of caring for a chronically ill child. No one has time to take photos. The photo essay itself only contains a few images of tube feeds, most are of adorable kids with feeding tubes – and we have plenty of those. Euan was, and still is, a joyous, engaged and charming kid.
One of my major frustrations with the natural birth lot is the assumption that having a ‘natural’ birth and easy breast feeding journey is a kind of moral victory. That green smoothies and yoga somehow protect you against adverse outcomes when it’s all just luck. I got unlucky with the pre-eclampsia, but I got lucky with my ability to maintain a breast milk supply for 13 months through exclusive pumping. Many mums can’t, and it can make the NICU journey that much harder to have your body ‘fail’ you twice.
It was such a long road, but Euan is now a happy, healthy two-and-a-half year old who loves guitars, cats and making friends with strangers. Eating is still an issue, but we’re getting there.
Sarah a neuroscience researcher, mum to Euan, two-and-a-half, and “Ichabod”, 38.5 weeks in utero. (The working title is a long, and not very funny family joke.) She lives in Melbourne with Euan’s dad, Alex, and spends her spare time (ha!) mountain biking and exploring the outdoors.
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