Life back at home quickly settled into a new normal for us and due to Covid-19, Georgie was home from childcare, so we had a few weeks to really bond as a new family of 4. Freddie is very much now just like a normal baby and is completely unbothered by the hemangioma. His heart is stable, and he is just on some diuretic medication to stop the fluid retention associated with the heart failure. He will be going back to London every 3 months for check-ups with cardiology and dermatology but other than that, he is a perfectly happy, thriving little boy. His hemangioma continues to involute at a fantastic rate and almost seems smaller every day!
I find I’m getting more confident in taking Freddie out places, introducing him to friends and being asked what the lump is.
One main piece of advice I want to give is to use your support network. This is something I’ve always been particularly bad at and I’m the one people come to for advice and I could do that until the cows come home but actually admitting I was struggling or needed help was the hardest part of this journey.
I remember being in the car with Jack and wanting to tell him that I think I needed some help and it took me 30 minutes just to start the conversation with my own husband who has been through the same thing as me!
That really felt like the start of my recovery journey and now that I’d said it, it was out there and I knew he’d make sure I did something about it.
Writing this blog has also helped beyond anything I’d imagined. I never planned for anyone to read this and it just started as a note on my phone that I’d probably just delete after a few months. I’m proud that I’ve opened it up to others and this is helping me to heal. It’s helped me to be a bit more honest than I would have been. Even to my immediate family and best friends. These have been my raw and unfiltered emotional thoughts and getting them out of my head onto paper was one thing but letting other into that has been scary but so rewarding and now people actually know what happened rather than just the factual version of events that I real off to people who ask.
I’ve found the power of social media helpful during this time as well and during my pregnancy, I found a Facebook group for parents of children with hemangiomas. I commented in the group not long after we had the diagnosis and had a few comments from parents who has similar stories. I messaged two women from the group who has very similar diagnoses and asked them to explain a bit more about it. It was nice to speak to people who knew what I was talking about. As brilliant as my friends and family have been throughout this whole time, speaking to someone who had been through it was a real comfort. They both had really positive outcomes as well which really helped me feel a lot more positive. After Freddie was born and we were back home, I posted in the group again. I was having a particularly low day and needed a bit of attention and reassurance that social media is brilliant for. I posted Freddie’s story and a few photos and within a few hours the post had hundreds of likes and comments from other parents who had either been through something similar or just wanted to send their best wishes or just say how cute he was! Shamefully this is exactly what I needed. Just a little pick me up to let me know I wasn’t alone and even though all of these people were complete strangers and I’d never meet a single one of them, they were there for me and understood.
Since then I have written a post for another hemangioma blog to share Freddie’s story and the response I received from that has been amazing. People from all over the world have emailed and messaged me thanking me for sharing his story. I’ve even had complete strangers telling me that the post made them cry! As I write this now, the blog has had over 400 views and I really hope that one of those is a parent in a similar situation that may have been able to take some comfort from our story.
Another support I’ve found really useful is from my health visitor. During Covid, getting to speak to a health visitor regularly is incredibly rare so I feel very lucky. It took a few weeks to get going but once we’d made contact, I instantly felt better. She seemed genuinely interested in me and my mental health, which was the first medical professional, other than my fantastic midwife, to be interested in me. Everything else has always been about Freddie, which was understandable, but it was nice to be asked about me. We talked through what had happened and she just knew that I was hiding a lot of how I was feeling but yet she didn’t probe or push me to reveal anything I wasn’t comfortable talking about. We had regular calls every few weeks and I think this helped me far more than the usual health visitor clinic. There is no way I would have sat in the village hall discussing my trauma with her, so I am grateful to Covid for that. She also made me accountable for things without knowing. During our calls we’d discuss so many things from Freddie’s appointments to how Jack and Georgie were coping with things and she would always suggest things for me to try such as asking Georgie how Mummy and Daddy being away made he feel and trying to prompt open conversations with Jack about the everything that happened so we could discuss it as a couple. I’d feel as though I needed to actually follow through with these things and report back for out next phone call. I don’t think she ever expected me to but I felt as though she had just listened to me bang on for the last hour so that was the least I could do.
Opening up to people is certainly helping and the more I talk about what happened, the easier it comes out. After Freddie was born I couldn’t even talk about what happened without tearing up of getting such a massive lump in my throat where it felt like I couldn’t breathe. Some days are still harder than others and sometimes I do still find myself overthinking and end up in a worm hole of negative thoughts but it is now easier to pull myself back out of that and I hope this continues.
To begin with it was daunting taking Freddie out in public and allowing other people to see his hemangioma but other than 2 shop assistants, no one has ever said anything about it. He does get a few looks from people, but they very rarely say anything to us, and now I find if you stare at them back they usually look away pretty quickly!
It’s been hard to process everything that happened over the 3 weeks after Freddie was born but having a great support network has really helped and I’ve been very lucky to have great friends, family and husband to help me through it.
Together Freddie and I will continue to get stronger and will help each other through this time. It’s not been easy and there have been days that I’ve wanted to give up, but he is a fighter and the least he deserves is for me to help him fight.
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