Weight and CHD

This has been sitting in my drafts for six months now. I’m not sure what its really about you see. I intended it to be about life with an NG tube, but its not about that at all – its two parts breastfeeding advocacy, one part rambling. But as they say, its better out than in, so for what its worth, here it is.

I remember the day when I was told that Albie would be going home from hospital complete with a nasal-gastric tube. At that time, we thought he would just have the tube in for a few weeks while he got stronger. I was really gutted about it and didn’t want him to be discharged at all. I remember saying to Marcus that I wanted to stay on the ward until they had got rid of it.

I wanted to go home and for Albie to be normal – or at least, I wanted the outside world to think he was normal.  I knew that with a tube in people would know instantly that Everything Is Not Right Here and I didn’t want that for my baby.  And if I am completely honest with you, I didn’t want it for me either. A part of me just wanted him to look like my friends’ children too. I kind of floundered on that for a while.

Gosh – if I had known in those early days, that Albie would live with the NG tube for the next 16 months I would have whirly-gigged right off the planet. Some things are truly best left unknown.  But now that we are past it, now he is NG free, I can look back and say that the weight journey was hard. And its curious to me how little I have blogged about the real nitty gritty it. Maybe I thought the photos did the talking. Or perhaps its because the cardiac issues were bigger. Or maybe I didn’t want to tell you what it was like because I didn’t trust we’d ever get rid of it. I don’t know. It was probably all of that.

But now the tube has gone, now I can see his face again, I know it was a big deal. And I wish, particularly in those early months when nothing much made sense, that I had been able to find more information out about what it might be like, what to expect or what I might feel like as a parent. Particularly a story or two about trying to match up being a natural parent with a medically fragile child. So it makes sense for me to create such a page here. If one trying-to-be-natural parent living with a child with poor weight gain finds this blog,  reads this, and feels a bit better than hooray. Job done.

Natural parenting does come under fire when your child is medically fragile, it really does. And I can see why in some ways. We owe Albie’s life to the science of medicine – the alchemy of modern drugs, the skill of the surgical team. We know this. And with that being the stark truth for Albie – all the things that I considered important in the ‘normal’ world of parenting – breast milk, baby wearing, whole foods, hammock sleeping, cloth nappies – these were all moved down the hierarchy of what was important. I can tell you now, from experience, that amber teething beads do DIDDLY SQUAT when your child is lying in Intensive Care, believe you me.

So its challenging and a lot of the time you can’t do a great deal about it. A lot of the  time you acquiesce to the weight of medical wisdom and let your values be set aside by others. But I don’t think being a natural mama, and having a cardiac baby have to be mutually exclusive of each other.   I think this is particularly true when dealing with weight gain and nutrition.

A lot of this story about weight gain has a lot to do with breastfeeding as well. Before Albie was born, I was adamant that there was no other way to feed your child. And I still think that is far and away the truth. But the challenges of breastfeeding a cardiac baby are very real and so much of our early story is as much about that as it is about anything else.  There will be lots of talk of breasts and milk supply and pumps and expressing from this point in. Boys, if you are reading this, there’s your warning right there. Proceed at your own risk. Its boobs ahoy from here, I am telling you now.

BREASTFEEDING AND WEIGHT GAIN – the first six months

So Albie was born with his heart condition undiagnosed, via emergency c-section. He was whisked off to the neonatal unit straight away to figure out why his oxygen levels were so low. Once they realised he had a heart condition, he was choppered up to Starship Hospital in Auckland for surgery- about a 9 hour drive away. I was left in Wellington, still recovering.

I had expected that my baby would be feeding happily after the birth in our bed at home.  That had all been blown right out of the water but I was still committed to breastfeeding. I wanted to get my supply going for the time when I could hold my son so that’s what I focused on – expressing every three hours. Or should I say, that is what my sister and my nurse focused on me doing.  In those days and nights after Albie’s birth,  when we weren’t even in the same city as each other, I was shell shocked.  The nurses had given me this crappy colour photocopy of a blurry photo of Albie to look at. I remember looking at it to express milk (its meant to help – like porn for your boobs) and just crying and crying and crying.  It wasn’t the start to life I wanted for us at all.

When I got to Albie, I was STUPIDLY stoked with the expressed milk I had with me – tiny 5ml syringes carefully couriered up with us in a chiller box. It wasn’t enough, and the ICU began formula top-ups instantly. It wasn’t what I wanted, not in the world I had inhabited before his birth, not at all. I suppose that was the first open challenge to my natural parent ideals. I think if I had been prepared for this, I might have been able to ask about donor milk, or some other plan, but Albie was really sick and everything was swimming. I was a new mum and it was a lot to take on board. It just all happened around me.

Until day 5, Albie was fed exclusively via an NG tube, up his nose and straight to his stomach. It was a combination of what I could pump every three hours, and formula. Thankfully, my supply came in just fine so the formula that he was given wasn’t needed for long.  On the fifth day, Albie was well enough to try to feed from me. It was awkward to begin with, even holding him was new and strange, but we had a lactation consultant beside us the whole time, and we got it sorted – probably after about two days. We were lucky. Albie didn’t seem to mind that he had gone so long without learning to feed and was keen to catch up on lost moments. We left the hospital, NG tube free and fully breastfed somewhere in his second week. I felt totally victorious.

In the days that followed at home, Albie and I got on with being mother and son. I held him close and fed him any time he needed it. We did well like that. But even though Albie was settled and feeding well, plumbing inside his heart was slowly failing him. Albie’s pulmonary artery was continuing to narrow and he was getting less and less oxygenated blood around his body. So perhaps ten days after we got home, we were flown back at Starship and ended up having a BT shunt operation.

That operation was the end of ‘normal’ feeding for us. In the days afterwards, part of Albie’s bowel died so they had to give his intestine total rest. He was nil by mouth for a total of 10 days. During that time I keep pumping, every three hours but my supply dwindled down. I remember that I wasn’t too worried about it. I figured when Albie came to feed again, my supply would build back up with him. I had a mountain of pumped breastmilk in reserve should I not be able to keep up with him.

But the shunt they had put in was too big and too much blood was circulating his lungs. It made him tired, and breathless. So when it came to feeding, Albie wanted milk straight away – easy access, no work.  And it wasn’t either of those things. In fact, in the weeks after the shunt operation, feeding wasn’t working at all. He had to be fed at least three hourly, by the clock. I would try to feed him, he would get frustrated before let-down happened, then tire of it all and give up. If he was indeed hungry at that time, he’d cry and cry until he was fed breastmilk via the NG tube.  I would pump again after his NG tube feed was done to keep my supply going, and then wait. Repeat. And repeat. And repeat. Every three hours by the clock. It was awful.

His weight was slow to go on, and many people were questioning how much Albie was getting from me at all.  I was still determined to breastfeed Albie and knew from the time we had before the operation that Albie knew how to.  I wanted to do demand feeding (particularly through the night) but that was a no-go until Albie’s weight went on. So we continued with this three hourly arrangement.

I am in disbelief now that I was able to stick with it. Only the never-ending support of  Marcus, my sister and lactation consultants got us through. That and luck. Oh and sheer bloody-mindedness.  A few things made a difference – Albie showed signs of a dairy and soy intolerance so I cut dairy and soy from my diet and this helped him. The lactation consultant recommended a nipple shield to make it easier for him and that made a difference too. I was prescribed Domperidone to help my supply and that was good as well. We had some cranial sacral and osteopathy sessions. There were no quick fixes though. We  slowly, slowly, slowly made our way home from hospital – Albie had been born in February and we arrived home in May.

People always seem to talk about time whizzing by, about how quick babies grow up. But for me, that first winter after we got  home seemed absolutely endless. I struggled, I really struggled. I timed feeds, wrote records that are full notebooks long, watched my diet, drank breastfeeding tea. Did it. Did the lot – did anything. But as diligent as I was being, there was no magic solution to Albie’s weight woes. He was hard-wired for it to be hard and despite the extra calorie supplement he was being given (Calogen, a few mls down his tube after every feed) and the breastmilk topups after each feed, he was only just putting on weight.  I was losing faith in the supposed power of breast-milk. And I was tired.  Real tired. One night, Albie was asleep in his bassinet, having an NG feed because he had been too tired to do it himself. I was sitting beside him pumping milk and it hit me like a ton of bricks. How far we were from where I wanted to be. A babe in his bed, not in my arms, being fed via a tube with a machine taking from me the milk that was his. I went outside in the rain, walked around the house, stood under the clothesline in my bare feet and bawled and bawled into the night.   I wanted desperately to be ship-shape up and to just box on. But I wasn’t okay at all – looking back I was almost certainly depressed. I wish I could have been more honest with myself and the world at the time. I don’t think we do any favours to anyone by pretending it’s okay when it’s not.

Anyway, that night in the rain, was a real marker for me. I came in and stopped expressing there and then. Albie went on to having a fortified formula after each breastfeed instead and the weight off my shoulders was immediate. No longer was I tied to a pumping machine and I could just allow the breast-feeds to be what they were without getting uptight about having to pump next. I did feel that by using fortified formula for his top-ups, that I had failed somehow. Looking back, I did really well to get as far as I did and that would be another message to mothers in similar spots. Be gentle with yourself. Whatever you need to do, to get you through is okay – it really, really is.

I want to tell you that it got easier once he started fortified formula top ups and that Albie started gaining good weights. But neither would be true. Not really.  Albie gained crazily slow right through to his heart repair – consistently in the 0.4th percentile, right at the bottom of the percentile graph – which rather cruelly starts at the 3rd percentile.  My own esteem rose and fell with the weight on his scales – ecstatically calling Marcus if it had been a good week, deathly depressed if he lost some. And there was the reality of giving a baby a full 70ml of fortified formula after they’ve had a breastfeed. Sometimes it was just too much liquid and Albie would vomit the whole lot up. The days when we lost those hard-fought calories to the floor were tough.


I did wonder whether I should just drop breastfeeding altogether. I wondered if bottle feeding would be easier. Many people thought it would be. Thankfully, I had a sister who supported me endlessly. We probably spoke for hours each week about what to do. Sometimes the universe has the people you need ready for you and she was that person. I also found  a quote on the American Heart Association webpage that bolstered me,

“..the “work” of breast-feeding is actually less than the work of bottle-feeding. Sucking, swallowing and breathing are easier for a baby to coordinate, and the amount of oxygen available to your baby is greater while breast-feeding than when bottle-feeding. In general, when compared to bottle-fed babies, breast-fed babies with congenital heart defects have more consistent weight gain.” 

I saved the page in my favourites, where it remains today and carried on.


I am not sure what much of this has to do with being a natural parent. It would have been tough as any kind of parent, I do know that. It was full on. And I suppose that is another message to you too. Breastfeeding or bottle feeding, it’s still going to be tough. For me, personally, I felt like his heart condition had taken control over who I was to be as a mother. There was a lot of grief around that and the idea of it taking breastfeeding away from us too was a bridge too far. That is where my foot stomped  and my heels dug in.

I went on to breastfeed Albie to around 20 months. He had one runny nose.

SIX MONTHS ON – introducing solids. 

I have less to say about this, much,much less soap-boxing. But again, when it came to solids around the six month mark, the natural parent in me was challenged by the demands of a congenital heart condition. The need for Albie to put on weight, meant that his solids had to be high-fat and high-sugar foods – the more calories the better. We were told by the nutritionist to basically forgo his dental health and worry about his teeth later. That’s hard news to digest when you’d imagined a green leaf eating chickpea lover.


But there are calories, and then there are calories. We focused on making him foods with nut butters, avocado, olive oil, coconut oil and coconut cream for the fats, and blackstrap molasses, dates, raisins, fruits for his sugar hits. He ate whipped cream, but mixed with berries, he ate mayonnaise but spread on broccoli, his rolled oat porridge was cooked with coconut cream instead of water.  We were far from perfect and I was so worried our boy would grow up with a penchant for the unhealthy, but we did our best. And again, that is all you can do.

He took ages to eat, he didn’t eat heaps and he remained tiny. We kept food diaries and met with the nutritionist over and over again. He continued to have NG top ups but now they were after each meal, and one after the breast feed before bed. But there was no way to really remedy the situation till his heart was fixed. People would tell me that then and I wouldn’t really listen. It was true.


On the other side of his repair, Albie very quickly began eating surprising amounts of food in great variety. I stopped taking photos of Albie eating and Albie jumped onto the weight graph unexpectedly at the 9th percentile.

His favourite food at 2 years old is baked beans.


  1. Thanks for sharing this. I could have written this myself! Our Graeme is awaiting his Rastelli (or Nikaidoh) operation, has a bt shunt & we’re trying to accept life with the NG tube. I’m so happy to hear there is light at the end of the tunnel!

  2. This is so interesting…Our daughter was born with HLHS (single ventricle). I started pumping as soon as she was born and taken away to the ICU. She was put on IV fluids until her first open heart surgery (at 5 days old-it was so heart breaking to see her hungry that whole time, and not be able to do anything). After her surgery she got really sick and basically couldn’t eat for weeks. I pumped through it all. After she could start eating, she did really well with the breast milk, but after her second surgery at 5 months old, developed chylous. This was a real heart breaker. Here I am, dealing with a very sick baby in the hospital and pumping every three hours, and she can’t take any of it. She battled an effusion for months, and the whole time she couldn’t take breast milk. I pumped up until the time she came home, had a freezer full of milk and had to give her the most disgusting/sugar laden/awful formula. I now have breast milk that is reaching expiration, and it KILLS me to think about throwing it out:( Mira ended up having to get a G tube, so we didn’t deal with the NG once we were home. Although, the G tube is all kinds of trouble, so I totally understand. So glad that Albie is doing well now! And kudos to you for powering through all of that!

  3. Thank you so much for sharing your journey! I found this at a time when I really needed it. My daughter is 6 months old and has a VSD. After she stopped gaining weight from breastfeeding, she got an NG-tube. 2 months later came the G-tube, and that’s where we are now. I have almost given up pumping several times, and this gave me the encouragement I needed. You are a strong momma and an inspiration to me! Navigating these paths is never easy, and we pray that our struggle will someday enable us to help others.

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