Beyond the hospital bag

By Tiny Tickers parent-to-be Virtual Group Facilitator and heart mum, Abbie Mitchell.

“Have you packed your hospital bag yet?” A question many parents-to-be get asked as the weeks (or even months!) near closer to a due date. What if you are going to be a heart parent, though? Does ‘the hospital bag’ then have a whole new meaning? For me, it felt like it did.

When I was pregnant with an antenatal diagnosis of congenital heart disease (CHD), and as a first time mummy-to-be in the pandemic, the idea of packing my hospital bag was really daunting. Everything I saw online seemed to be geared towards what to pack for an expected, ‘normal/healthy’ birthing experience and baby. I put those words in inverted commas because I know that even a pregnancy and birth without known complications can be unpredictable.

I was told my boy was likely going to be ‘okay’ when he was born even with his serious heart defects, and then to expect his health to deteriorate a few weeks later, yet I was hearing mixed messages of how long we would be kept in hospital for whilst they did extra checks for him to confirm his diagnosis, and I had no idea what this could look like.

With my experience working with heart parents-to-be from all over the UK facilitating the Tiny Tickers virtual support groups, and being a proud member of the community myself, I now have a better idea of what can be helpful to consider, and have put together an infographic (see below) with some top tips and considerations for packing what I like to call, ‘a hearty hospital bag’.

Abbie and Jasper at Jasper’s one year heartivesary ‘hearty party’

Personally, I believe pregnancy can be an overwhelming time in general, let alone being pregnant / a carer to be for a baby with CHD. With this in mind, I have collated some information in different formats, as I know that even for myself, sometimes I prefer bullet points and headlines and other times I like a good blog to read through.

When I first joined the ‘club I didn’t ask to be part of’, as some of us call it, I held great comfort (and still do) in reading the experiences and stories from other heart families. I felt it was only right to write my own and share with others navigating their way through a CHD diagnosis. I wrote an Instagram post with some guidance on considerations for the hearty hospital bag (which is also saved under the CHD highlight on my profile Abbie’s Mind, where you can read more about our journey so far).

Here are my recommendations for a hearty hospital bag:

💛 The hospital bag can have a whole new meaning to a CHD parent-to-be. Whilst some babies may go home shortly after birth, others stay in hospital for quite some time and may even have surgery in their first few days or weeks of life. In our case, we were in and out of hospital before our baby’s operation and we found ourselves packing and unpacking a hospital bag multiple times.

💛 It can be a good idea to pack a bit earlier (our little lad arrived early!) so you feel more prepared and have a think about what sorts of things you may need for longer hospital stays.

💛 Hospital stays can look different during the pandemic too. You may not be able to pop in and out as easily to grab bits. Though Amazon and other lockers may be available.

💛 You could always try to call ahead to speak to the ward staff or research what facilities a hospital may have.

💛 Spare clothes and washing tablets were some of our go-tos! Some parents like us were put up in hospital accommodation, where we had access to a washing machine.

💛 If your baby requires surgery, you may also be advised to bring baby vests that open at the front, side or with poppers all the way down for easier access when being checked over and having procedures done. Our little babe needed scratch mits even in the summer to stop him from pulling out his tube! I’ve heard baby socks in larger sizes for their hands work well for this too.

💛 It can be helpful to write a list of what you think you may need before, and don’t be afraid to ask friends and family for help by listing practical (and sometimes seemingly boring!) gifts and acts of kindness during this time. A friend of mine came to the hospital with spare babygrows and my family did some of our washing! People will want to help however they can.

I’ll leave you with something that really helped me when we were/are in hospital for our heart hero and I’ll be using going forward: The “BRAIN” acronym. This is often referenced and promoted for use in labour and I am unsure of where to credit the source, as it’s on multiple official sites and blogs, but I found it super helpful for caring for a baby with CHD.

Benefits, Risks, Alternatives, Intuition and Nothing. The idea is that you can apply each letter and word when asking questions about the care for you and your family. I’ll give you an example of each.

“What are the benefits of this medication being prescribed for my baby? Are there any risks associated with this treatment? Are there any alternatives we can consider? What is my intuition telling me about this? What happens if we do nothing for now?”.

Whether rhetorical or to a medical professional, I found this acronym really useful for those times I couldn’t remember what I wanted to ask and had planned to write it all down and bring notes when in reality, it was hard for me and my husband to take everything all in. You can use these words separately or together, in part of or all throughout your journey, if you are unsure of something that has been proposed.

Remember, you are not alone. You are part of a wider heart community, we are here for you.

For more in depth discussions on the hospital bag and other topics preparing for a baby with CHD, you can sign up to our virtual peer support group for parents-to-be here. Read more from Abbie on her blog and follow her on Instagram.