Breastfeeding when one twin has cardiac issues – personal story

My twins were born at 37+1 by planned section. We knew that there was a problem with Arthur’s heart and had been told that he would be taken quickly to the NICU. I was determined to try to feed but also knew that it might not be possible for him. I managed to hand express over a hundred 1ml syringes of colostrum before they were born which I dropped off on my way to theatre. I wanted to do something for him and I felt that this was all I could do. Once born I got to kiss his head before he disappeared. There was not the precious moments of skin to skin, that tiny person rooting for their first feed. I had that with Violet and it was more precious and poignant because Arthur was not there. There was nothing I could do for him and I felt so helpless.

I didn’t see him again for 6 hours and didn’t get to hold him until he was 2 days. I fed Violet who luckily proved to be a milk monster and was quickly encouraged to start using the hospital pump for Arthur. I now realise this was too quick and my milk wasn’t even nearly in. Precious colostrum was lost into the pump and hardly any collected. They soon asked if he could have donor milk and I readily agreed. I’d always understood that he would need more than I could give and was relieved to receive such a gift from another mum.

At 7 days we moved to another hospital and Arthur was prepped for surgery. I had not yet been able to even put him to the breast but my milk was in and I was keeping up with his needs and that of Violet. I realised that in the move of hospitals I hadn’t been seen by a midwife since day 3 and Violet hadn’t been weighed. It’s easy to focus everything on the child who is ill and forget yourself. When I found a midwife it turned out that Violet was gaining but not enough. She still hadn’t regained her birth weight. Although they had a look in her mouth and said she didn’t have Tongue Tie they did say that she was small and her mouth just wasn’t able to take enough nipple (by this time feeding had started to really hurt) they suggested nipple shields which did an amazing job for us. Interestingly both babies were later diagnosed with TT and had it cut at 4 months.

Violet then started to gain enormous amounts of weight and build a beautiful supply for Arthur. I pumped every time I fed her and I fed her a lot! Arthur had his first open heart surgery at 9 days and spent nearly 3 weeks in intensive care because he didn’t recover how they expected. During this time I filled their freezers. The Doctors and dieticians insisted that some of his feeds (all tube) be high calorie formula but he still had some of my milk. He had been very poorly and was weak so needed any help he could get.

At 5 weeks I was allowed to try and feed him. He wasn’t really interested and just licked me. The next time I was allowed to offer it (once a day) I tried with nipple shields and he did really well. I fed Violet at the same time and she triggered the let down when his suck wasn’t strong enough. I fed him once a day for the next couple of weeks. We were moved back to a more local hospital and although our cardiologist would swear he is pro breastfeeding they aren’t really. They like to measure all the fluid that the cardia babies have. They want them to grow big for the next surgery. They do not want them feeding, which they still insist takes calories, in a way that they can not measure or control.

After a week Arthur deteriorated and our cardiologist wasn’t around so I persuaded a different one to let me feed him all day instead of the high calorie formula. His saturation levels were better when I fed him and he was more stable. I was proved right and the next months were filled with feeding plans and top ups through the tube. The dietician here was amazing and after every two day weigh in we would tweak the plan depending on how he was gaining. My cardiologist never found out how much I was feeding him and no one cared because what we did worked and he reached his goal weight for the next operational.

We still hadn’t made it home. Violet and I were living in a Ronald McDonald’s room at the hospital and spending every waking moment on the ward with Arthur. We were not allowed to stay with him until they took his tube out at 4 months. They mistakenly thought he would take their high calorie formula over night but he wouldn’t and I wouldn’t let them put the tube back. We then all went dairy free because it was felt both babies were struggling with this (they were right).

We moved back to Southampton for the next surgery and again I was back to pumping. It was another tricky recovery and he was mainly tube fed my milk for 6 weeks. I struggled with my supply at times and ended up pumping for the next feed so came to the decision that I needed help. My mental health was struggling but asking them to make up formula was hard. I defined myself as a mother to Arthur by my ability to feed him and suddenly I couldn’t. They made the formula and I think he had maybe two feeds during the next two weeks. Taking the pressure off was enough to help me with my supply.

After another 3 months we made it home but he was still having tube top ups. By this time they were nearly 9 months and the tube didn’t help him with eating solids so when he pulled it out we left it out. That was two years ago and we are still feeding with no signs of stopping. Breastfeeding a child through everything Arthur has been through was important for me as a mother. At times it was all I could do for him. I would sit next to him hoping and praying he would make the next day with my plastic best friend pumping away and Violet my constant companion and shining light in my darkest moments in my arms. Feeding him meant that Violet and I could stay on the wards with him for the majority of his stays. Until they hit two I never had to leave Violet behind which was very important for me. I pumped and topped him up once a day until he was 22 months. There is a strong stubborn streak that runs in our family. It is what kept me going with feeding. I was determined it was what was best and what I wanted to do so I did it! I see it in both my beautiful babies. Arthur has survived when it was questioned but also has continued to feed when they thought he wouldn’t/couldn’t thrive on it. Of all the 8 cardiac mums I’m in close contact with only one other has managed to feed. These two babies are the healthiest and the ones without eating issues. Breastfeeding has done us very well! It is one of my proudest achievements.

Julia Shields, 2021

Can you help?

We imagine a world in which mums-to-be know that it IS possible to breastfeed multiple babies and that they have the information and support available to do so. We need your help to achieve this. For example, we want to: produce printed and online information for parents and medical professionals; roll out training to medical professionals so they can support new mums better; train more breastfeeding peer supporters with experience and knowledge to support parents of multiples. PLEASE HELP!