How to help a friend with a critically ill child

With February being heart disease awareness month, it’s making me reflect on my own journey and how I/we might help others. My son was born in the summer of 2019 and diagnosed postnatally with three congenital heart defects (they found a fourth at six months). With members of our immediate family either abroad or hospitalised themselves, we relied on the support of our wider friendship circle. We were inundated with messages saying “if you need anything let me know”. The problem is, in the eye of the storm, you don’t know what you do need and it’s even harder to ask for it. Below are a few things I found helpful:

1. Healthy drinks, food & snacks

Whilst for many it’s hard to even consider eating in times of stress, I knew I had to look after myself or I couldn’t be there for my baby. Smoothies, moju cold-pressed shots, bags of nuts and one day someone even dropped of a grocery bag of healthy lunch of salads / sandwiches. We were inundated with so much sugar which is of course all I actually wanted but not what my body needed. We were also gifted some food vouchers – they were brilliant as it meant we could order in food when we were at our lowest and not worry about cost.

2. Positive distractions

There can be a lot of time sat around and waiting. Positive mindset books, a story to read to our child, a puzzle book, a colouring book. They might not ever get opened but it was so nice to have a distraction. Links to funny memes, comedy clips or good meditation exercises. Lots of people text to say “how are you?” The problem is that every single day can be a rollercoaster so answering that is quite hard. But I really appreciated people who would text and say “hey I found this” intrinsically I knew they were thinking of me and for my mental health it was good to have a different conversation at times.

3. Do they have other children / pets / responsibilities?

So many people offered to have my eldest son stay at their house. For me, I really wanted to keep as much normality as possible. I didn’t want him to be in a different environment without either of us wondering what was happening. I wish I had actually asked for some of my closer friends to stay at my house with him. This is probably more my individual preference and it might be different for your own friends. But it could be worth an offer so that their partner can go be with them at the hospital. Equally, when I look back, I don’t know how I stayed in emergency accommodation on my own 3 days after a caesarean, I wish I had asked for someone to stay with me.

4. Essentials / care packs

It wasn’t something I needed but I was gifted laxatives & snacks to help encourage breast milk (this could be good for a new Mum though).Things that were helpful included painkiller supplies, vitamins, tweezers, clean pants & socks, spare toothbrush/toothpaste, decent mini bottles of shampoo & conditioner were all super helpful. Even spare pyjamas/nightie because when you are living in the emergency accommodation you don’t always have your head in the space for laundry.

5. Don’t be offended if they don’t see you / don’t want to talk

My day revolved around arriving to see the night shift nurse before they did morning handover and morning rounds. Sometimes Id squeeze in breakfast before morning rounds. Then I would be loitering if I knew I might get to chat to a surgeon or another member of the specialist team. I might break for lunch and then be waiting to see afternoon rounds / evening handover. You aren’t always in control of your own days. And I wasn’t allowed to take phone calls on the ward. Trying to plan a day / time to see someone was hard for me. But if someone tipped up on the day / was in the area I found that easier.

6. Set up a ko-fi.com

I would have never asked for money from my friends. But a ko-fi fund allows them to buy you the equivalent of a coffee. We both didn’t work for a long time and were haemorrhaging money. So when some of our friends in the freelance community set this up for us, it just meant we could breathe a bit more easily about buying a Prêt sandwich for lunch.

Ultimately, every individual is different so these are just thoughts to spark ideas rather than specific instructions and they are obviously tailored from my own unique experience. I guess my main takeaway would be, we don’t always know what we need or what is good for us or how to ask for it, even when offered. Every single person who took an action though, I just remember how much it helped to raise my energy / positivity and help to carry me through.

To read more about my journey you can visit our fund: https://www.justgiving.com/fundraising/lucywern

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