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Shared experience

We had to figure out a way to manage her type 1 in tandem with the breastfeeding

Lydia and James’s story

Our baby Serena was diagnosed with type 1 diabetes after she was rushed to hospital with diabetic ketoacidosis (DKA) on her first birthday. We had just come back from a holiday and a lot of her symptoms had been masked by travel and the heat.

She was so young and tiny. It was terrifying as we were in resuscitation for over six hours before spending two days in the high dependency unit.

Learning to look after a baby with type 1 diabetes

While we were in the resuscitation room, our consultant came down to meet her and both the diabetes specialist nurses were there too so within a couple of hours we’d met the whole team who’d be responsible for her ongoing care.

They began teaching us how to manage the condition straight away. Within the first 24 hours, we started a lot of learning which has been continuing ever since. The day after she was admitted, they gave her a continuous glucose monitor (CGM) which helped us track her levels, giving us a little reassurance. Within six weeks of her diagnosis, she was put onto a hybrid closed loop system which is able to deliver the tiny doses of insulin her body needs.

Leaving the hospital was scary because we felt like our whole life had changed. We were overwhelmed by the responsibility of managing her lifelong condition and the impact it would have on our family.

Breastfeeding and type 1

As she was breastfed, we googled ‘breastfeeding a diabetic child’ to try and find guidance. But the only results we found were about how to breastfeed if you’re diabetic yourself. The nurses and doctors didn’t really know either.

Basically, we just had to figure out a way to manage her type 1 in tandem with the breastfeeding. It was lots of trial and error. It’s taken six months but now we feed her and think ‘right, that was a 7-gram feed’ or ‘that was a 4-gram feed’.

Because of all the technology that we’ve got such as the CGM and the pump, you can see a timeline of what Serena’s blood sugars have been doing. And if you don’t know what’s going to happen with her levels, you can always correct the insulin dosing afterwards. So we were reassured by that. A lot of specialists would do weekly reviews with us so together we were just trying different approaches and changing and adjusting her carb to insulin ratio.

Learning through trial and error

They could see that one of the issues affecting her blood sugar, that we were really struggling to manage, was the amount of insulin she was being given for the night-time breast feeds.

Breast milk is different throughout the day and that can affect the carb content. She was probably not being given enough insulin after night-time feeds and then the pump was trying to overcompensate and so overdelivering and stacking it. It was a bit counterintuitive because she was having multiple hypoglycaemic episodes every day, but the way to combat that was to deliver more insulin up front so that the pump would do less work in the background.

Managing her hypos and feeding

There are times now when she has a lot of hypos and because she’s so little that it’s difficult to manage. So when her blood sugar’s going low, I can obviously give her some glucose or a sugary snack but I can also just give her a feed which I know is really nutritious for her and that will bring her out gently too. So the breastfeeding has been a tool to me as well at times.

One of the reasons that the specialists pushed for her to go on to the pump so quickly is because not only does it do the background corrections but it can deliver 0.1 of a unit of insulin which is five times smaller than the measure given by the insulin pens.

Moving onto solids

With weaning, there have been times when we’ve picked any dropped food up off the floor and weighed that to make sure we’ve calculated her actual carb intake properly. We’ve spoon-fed her a bit more than we did our other two children. We try to make the process as baby-led as possible but sometimes you’ve just got to know what she’s eating for her own safety.

Going to nursery

The best thing about this journey has been finding Serena’s nursery after our original childcare fell through when she was diagnosed. Initially, we thought one of us would have to give up work as the first few places didn’t give us a good feeling – and we really needed that before we could trust someone else with her life. But here we were totally reassured, they took everything from carb-counting to getting everyone trained up really seriously. They couldn’t do more for her. It just all fell into place brilliantly.

With the technology we’ve got, we can see her blood sugar in real time and we often know if they’re going to call us because we can see that she’s going up or down. We have a really good back and forth with them and they feel welcome to call us whenever they like.

The support of others

For us, because we have older children too, it’s been really important to take help along the way. People offer to help and they mean it.

The other thing is to be open about the reality of the diagnosis and what it means. It’s about managing other people’s expectations and building a strong network around you. When we’ve been honest and up front about the condition and what it means for us, people are less afraid.

Build that awareness because type 1 is a misunderstood condition and you’re going to have to do a lot of educating – but you can do it.

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