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Hospital breastfeeding a child with a congenital heart defect – Louise

Percy was born at home, I've always believed my body would know what to do and that I needed to trust it. I read up on hypno-birthing and was excited to give birth. I also read up on breastfeeding a lot; I've grown up around breastfeeding and it felt like a vital part of being a mother for me. I had an amazing home birth, I loved it more than I could imagine! I left Percy's cord un-clamped for over 45 minutes, until we stared to get chilly in the pool (I wish I'd left it now!) the midwife said she'd never known a cord pulse this long!! My boyfriend cut the cord and after I'd been examined he brought Percy to our bed and he latched on, my mum helped me to feed him and it was perfect! He fed, then we slept.

We were home for two days, and I couldn't believe how easy we found breastfeeding, I think that was all down to him latching so well. Our midwife came out later on the day he was born and the following day and just gave advice on positions, but in the main we were doing well.


Percy was found to be ill when he was two days old. After everything had unfolded and it was clear it was his heart; he was on oxygen and had various lines into his tiny body I remember saying to the consultant "I just want to feed him; he'll feel better when I've fed him" and then came the mind blowing news that they had to ventilate Percy; this near broke my heart. It brought home how serious this situation was (I felt confused and really disorientated about all of it).

The staff were very clear though; Percy needed my milk and he would be given it if I could express, it gave me some ray of hope. We went home to get some things and I remember sitting on my bed with a Tommee tippee hand pump trying to express, whilst crying. My mum tried to show me how to hand express, but my milk hadn't "come in" and I was distraught.

We retuned to the hospital shortly after this. An amazing nurse came and sat with me, she showed me how to use the hospital pump, she was so kind and was so encouraging that Percy would benefit from my milk.

When we got to Hospital A they again encouraged me to keep expressing, he was on PICU [paediatric intensive care unit] at this point. I was promptly told about the breast feeding vouchers as well. A nurse told me that I'd need to express every 4 hours but not to do it through the night as I needed my rest. This was the day my milk came in, I truly believed my boy was going to die, and I had these enormous boobs that throbbed and ached and leaked which meant I couldn't even distract myself for a second. I remember leaving PICU that night and telling my boyfriend it felt like my body ached to be with Percy...and then I had to sit and express just so I could get to sleep, and then the second I woke up they ached and throbbed; I needed my beautiful baby boy!!

Percy had his op the following day, I learnt that 3 hourly expressions was the best thing to do, including at least one at night. I was TERRIFIED my milk would dry up, so if I missed a chance to express I would cry and scorn myself, telling myself I was an awful mother. This seemed to go on for weeks. I drank gallons and forced myself to eat, it made me feel I was doing something helpful. But every second of the day I was convinced my milk would dry up. I've never been anti bottle feeding, I'd told myself if I couldn't breastfeed then bottle wasn't too bad, but now, now that all my ideals of being a first time mum had gone out the window, breastfeeding is what I clung to. So I worried every second of the day about my milk supply, some days it felt like it consumed me.

Around day 10 a dietician came to see us. They thought Percy had chylothorax, she explained what this was and then without a thought said "so he'll need low fat feeds for six weeks, we'll see how the next week goes": this was one of my worst days. The bottom fell out of everything, the one thing I'd clung to, the one thing that kept me going each day...blown out of the water (and I'm not even sure what she's talking about). I cried quite uncontrollably all day, I literally couldn't contain myself. In hindsight, this was only a possibility, but it was very much the straw that broke the camel's back. Percy didn't have chylothorax, but the week waiting and watching his drains was like torture! I didn't know if I had the strength to carry on expressing for six weeks, would my milk last? Would my supply meet his demand when he could feed again? Would he latch? Would he like the taste?? Hour after hour after hour this went on in my head. The PICU staff stayed very encouraging, they made me feel I was doing the right thing, and I felt "cheered on" through it all. There was a breastfeeding support worker called Caroline who knew all kinds of helpful advice and was generally wonderful!! After about 2.5 weeks we moved to K2, the cardiac ward. I really struggled with the transition from 1:1 care, and being given more freedom to hold and care for Percy as I didn't feel like I knew what I was doing. Percy's resps where still very fast, which caused a lot of concern when we first arrived on K2, which I found really difficult as we'd just been waved off PICU with everyone saying how well he was doing, and now there were doctors panicking about his breathing telling us it was "off the chart". No one was very clear about when I could breastfeed, and I'd been told along the way that we would have to re-learn or that some babies struggle to latch again. We had skin to skin for the first time on our first night on K2, it was wonderful and Percy sleepily rooted for my nipple, it was nice just knowing that he remembered!

The following day we were having skin to skin again: I'd stripped to the waist and just put a zip up hoodie on (it was a pre pregnancy hoodie and miles too small), the curtains were pulled back and ward round had arrived! A consultant, about 4 junior doctors and a couple of nurses; and me with my boobs out! I thought they'd excuse themselves while I covered up, but they didn't; nudity doesn't bother me that much, but it made me feel really vulnerable, I tried to pull my hoodie around me but that did very little; and once I'd put Percy on the bed I was pretty much half naked! Ward round continued; the consultant was lovely and made me feel better about being on K2, he also told me we could give breastfeeding a go as soon as we felt ready. Towards the end of it someone from behind me asked "when should we start giving him bottles"...panic set in instantly, along with a fair bit of anger! The consultant responded with "we won't, we'll just continue to support mum to breastfeed", this at least made me feel like someone was on my side!

Two young female doctors stayed behind and told me they had breastfed their children and they would help me. This never materialised, and I was left behind the curtain on my own trying to work out how to feed this tiny, delicate baby, who's chest was still raw, with wounds from his drains, plus NG tubes and various other wires to work out how to manoeuvre. But we muddled through it together and again, Percy was amazing and after a few tries latched really well. I learnt to hold him under his head and bum (as advised his sternum could be ripped open if I held him incorrectly!) so I'd sit very rigidly and uncomfortably for hours.

The days and weeks that followed were quite difficult, there was still no explanation for Percy's breathing and each doctor gave us different explanations (often told as if it was definitely what the problem was, and then contradicted by another doctor an hour later). Each nurse was different around his feeding as well, he was "prescribed" x amount of milk per hour, which some stuck to to the ml and others where more relaxed about. On days with an anxious nurse I'd be asked questions like "how empty do you feel" after feeding him, like they wanted it in mls for their chart, or "how much do you think he's had", it felt like I was the first mum to ever breastfeed on the ward and made me feel really anxious and quite alone. Percy wasn't putting weight on, his breathing was so fast it seemed he was burning all his calories just laying there; but because of the fluid restrictions he couldn't have more milk. So day to day it would change, I could feed him, then I couldn't feed him. Some nurses felt that feeding was too much effort for him so opted to put it down his ng, this made sense, but why did it change day to day?

One morning before I'd got to the ward I got a phone call asking me to go over as he needed feeding; I was confused as the day before it had all gone down his tube, but I ran over. Percy had pulled his NG out and needed a feed, of course I was more than happy to feed him, I loved feeding him! The nurse told me that they weren't going to pass another NG and they where just going to see how he got along breastfeeding. My head almost exploded; the day before they were worried he wasn't putting weight on and I wasn't allowed to feed him so he could rest; now it was all on me?! Percy was latching well, but would only feed for a few minutes, and sometimes I wasn't sure he was feeding at all. We'd been aspirating his stomach after some feeds (when asked to) and sometimes there was 10mls, sometimes 20, sometimes much less. When ward round came around later that day I expressed my concern about him not having an NG tube, the consultant looked at me, he couldn't believe it had been suggested at this stage. The nurse who had originally told me this, came and passed another NG tube and then told me that Percy was to have all his feeds down his NG?! How could things change so much in a couple of hours? I'd been told so many different things from this one team.

Percy was really unsettled this day, wriggling and crying; I knew he wanted feeding and cuddling. I spent hours cuddling him, patting him trying to give him a dummy...everything I could think of. Then it occurred to me, all this upset was surely burning more calories than if I fed him? Their logic didn't make sense?? I asked to speak with one of the doctors, as I waited I decided to do what felt right, so I picked Percy out of his cot and fed him, he fed for 2-3 minuets and then fell asleep, the most restful he'd been all day. The doctor came in to see me, I explained that I knew I shouldn't be feeding him, but I was anyway and explained how I thought there was a flaw in their logic. She stopped me before I had finished and asked me who had told me I couldn't feed him, as that wasn't what had been discussed at ward round. She checked with the consultant and as she'd thought, I could keep offering breastmilk and then Percy could be topped up down his NG. The nurse hadn't communicated this with me, I felt like she'd done this because it made her life easier, so there was no ambiguity about how much he was having. I was furious. The nurse was sheepish for the rest of her shift and later told Andy that she felt she had "let us down".

Percy's feeding slowly improved but his weight didn't. I knew it would as soon as his breathing slowed, but it showed no signs of slowing. The consultant kept saying if it didn't improve "in a couple of days" they would have to investigate further, as they couldn't quite explain his breathing so couldn't rule out it was the narrowing in his aortic arch.

The "couple of days" lasted about ten, it felt like a life time. I started to really struggle with everything, I felt paranoid on the ward, like people were watching me and thought I was an awful mother. Percy's feeding seemed to get worse at points and he'd struggle to latch, so we'd both end up sat there crying. There was always a rumbling between the doctors of a "high calorie feed", no one could say for sure if he'd need them, for how long, how many; but it seemed crazy that that was an option instead of support to help me feed Percy. I had no idea if I was doing it right, I did constant research that seemed to make things worse. The one solace in it all was La Leche League, I emailed them for help and they were amazing! They answered all my questions, no matter how silly and made me feel like I was doing ok.

Then one day Percy's breathing seemed to begin to slow. The following day his ng was removed and it was all down to me and the boobs again! I was terrified! I knew we could do it, but there seemed to be an emphasis on him to gain weight immediately, he still hadn't gained any by this point. That night we were moved out of HDU [high dependency unit] and I was able to spend the night with him. It was amazing but also really overwhelming, I remember being behind the curtain with him, crying, he wouldn't latch and had started to "fuss" and turn his head quickly as if he couldn't find my nipple. I had barely any sleep. The following morning a member of staff came around and pulled the curtains back. I felt so low I just wanted to cry all day, in my mind they would see he hadn't gain weight and get the high calorie feeds out. My paranoia was at an all time high, I felt like I was going to have a complete melt down. I kept pulling the curtains back around us, and the housekeeping staff kept pulling them back. She said the nurse needed to be able to see us, but I really didn't want to fall apart in front of the entire ward. I'd pulled them around to feed Percy, he fell asleep, so I put him in his cot and sat next to him with my head rested in the side of his bed. Once again, the curtains were pulled back, she must have seen how tired I was so asked me why didn't I go to Mac house for a rest and she would "give him a bottle if he needed it". I told her we were breastfeeding and I didn't want to introduce bottles yet, but thank you. She then went on to tell me that I was making a rod for my own I didn't scream and shout I will never know.

When Andy arrived I cried all over him, I think I cried for the rest of the day....still no weight gain!! There still seemed to be a lack of understanding; I remember mentioning to someone that Percy would literally quite happily spend hours on my breast to which they responded "oh, that's a bad sign" just that, and then they floated off to leave me with the inside of my head again. Two days later...Percy had gained a tiny amount of weight....and was discharged! I couldn't believe it! It seemed so soon, the gain was so small and his breathing was still well above normal. I was so happy but incredibly scared, would I know how to look after this delicate baby at home?

Once home I had amazing support with breastfeeding, but my anxiety around it was still massive. Despite the weight gains and the clearly satisfied baby, I was convinced I was doing something wrong. I had developed massive over supply (from pumping and feeding at the same time I think) so Percy would only have one boob as the other one chucked milk at him with such ferocity it made him gag. And despite the over supply I was also still convinced I wasn't going to have enough milk, so would pump as much as I could to freeze, obviously perpetuating the over supply issue. It took me at least 8 weeks (and getting him weighed 3 times a week to reassure me) to just accept that we were doing fine, and although we didn't feed in the "right" position it worked for us.

Percy has just turned 1 and we are still breastfeeding. It's been hard work but I still love it, cuddled into me having a feed is definitely his happy place. And I know it's helped to make up for the time I couldn't cuddle him. I also feel proud that my milk fuelled his body when it needed to heal.

Hospital A is an amazing place, I literally cannot thank them enough. But a bit more knowledge and compassion around breastfeeding would go a long way.

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