Living with CDH

I first heard about this serious, life threatening condition from Jess (@jessicaroselander) and found it important to raise awareness and educate people on what it may be like to live with it. So, I asked Jess to share her experience with us, so that we can understand the issue better.

My name is Jess, and I am a twenty-two-year-old graduate living in the Birmingham area! Kate kindly approached me about writing a piece about the life-threatening illness I was born with: Congenital Diaphragmatic Hernia (CDH). CDH is when you are born with a hole in your diaphragm, meaning that your stomach, intestines and other organs are able to travel up into your chest. This means that CDH babies are often born with smaller or compressed lungs or pressure on their heart.

It is relatively common in new-borns, effecting 1 in every 2,500-3,000 births (around 52,000 births each year), and is often found and treated early on. However, many aren’t so lucky. I was lucky because my hernia was treated when I was just a baby, but I actually re-herniated again at the age of 18 (I’ll get into that later)! My poor mum was completely new to parenting, and even more distressed because her child was really sick. She knew something was wrong straight away when my symptoms started to show, which included vomiting up every ounce of milk I was fed, and, although it took a few different doctors’ visits, I was finally sent to the hospital at 5 weeks old.

Having survived this condition twice, I feel proud of my scars because I know that I survived such a serious illness, but many people don’t know how bad CDH really is, so, I am writing this in hope of spreading awareness for the condition and how it can affect your mental and physical health, particularly as an adult.

Physical Impact
Following a long operation at 5 weeks old, where I had only 40% chance of survival, I was lucky enough to pull through. As I grew older, I had a few check-ups but, otherwise, the only proof I has suffered from this illness was the huge scar across my stomach. For years my physical health wasn’t really impacted by the condition… that was until I turned 18.

I had just started uni, and I was loving every second of it: drinking every night, making new friends, living alone, it was great. Until I started to experience some breathlessness and pains around the area of my operation a few months into my first year at uni. I had what the doctor’s thought was pneumonia a few years before (having now had severe pneumonia, I know this was not the case), but, what we later found out was that the grey area on my X-Ray had actually been the hernia which had reappeared/reopened.

I was booked in for a major chest surgery in January 2017. This time was different to the last though. I wasn’t a baby anymore, meaning I would feel and remember the pain more than I would’ve before. Despite being absolutely terrified walking into the theatre, the pain wasn’t too bad straight after the surgery because I was high as a kite on morphine. I also had an epidural, meaning I couldn’t feel anything below my neck. They kept me this way for around 4 days, and then took the epidural away. I have never been in so much pain in my entire life. It was AGONY. I couldn’t move, I basically had to learn to walk again and, to make it even worse, when the physiotherapist tried to help me start walking, I threw up all over her (and myself).

As things go, though, my physical health went back to normal pretty quickly following my operation. Due to being young and fit, my new scar healed quickly, and I was back on nights out within 8 weeks. I still shouldn’t lift heavy items as it could cause another hernia, which is annoying because I like lifting weights at the gym. I also still get strange pains sometimes, but that is mainly just scar tissue which feels slightly numb/tingly.

Mental Impact
I never really thought about the mental health side of my condition until the last year or two because, like I said, I have always been proud of my scars and everything I have been through. However, when I had my big operation in 2017, it did begin to affect my mental health in some ways because I felt as though I could never be as healthy or physically able to do some things that my friends could do. For example, if I am experiencing discomfort where my scar is, I find going to the gym, being on a night out, or even just trying to get comfortable in bed SO draining, which can really get me down.

I also worry that one day I won’t be able to give birth or carry a baby because of my stitches, or the risks that it might hold for me to get pregnant. I have previously been told by my consultant that I will be a high-risk pregnancy if and when I decide to start that chapter of my life, and that I will have to have a caesarean! Although this is all physical stuff, it really takes its toll on my mental health and the way I see myself.

There have been studies which say that there is a general worry surrounding physical health in CDH survivors which can have an effect on their mental health, and I 100% agree with that. Worrying about the things I physically can or cannot do affects my mental health because I find myself doubting everything I do in fear of hurting myself. In particular, though, I find the constant inability to progress in the ways that I want to in regard to fitness and the gym affects me more than other factors. I think I put myself down because I just feel like I will never be able to lift the weights I want to or become as strong as I want to, and that demotivates me; I often think what is the point?

Nonetheless, my mental and physical health is generally fine and, although I feel a sense of fear and worry that I might not be able to achieve the things I want to, I am happy and alive, and I think it is super important to always remain positive about that.

Finally, I would like to encourage people to research CDH because it just so happens that April is CDH awareness month! It is something that has really affected my life but I am so grateful to be alive when so many others haven’t been as lucky. Thank you for letting me share my story!

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