Why I continue to blog - 2018

On the 3rd May 2013 we were given the most amazing opportunity for our unborn daughter. We took the chance because we had been so devastated the week before when we were told that palliative care would be her only option and only a 50-70% she'd make it to her 5th Birthday.

I spent as much time as I could during the remainder of my pregnancy researching Interrupted Aortic Arch, there wasn't much to be found, to be honest. I just wanted to know that somewhere in the world another baby had been through the same operation that we were facing and had survived. I just wanted to feel a tiny shred of hope that we had a shot in hell of making it to the other side with a baby in our arms.

I couldn't find anything.

The closest I got was "Coarctation of the Aorta" on the British Heart Foundation website. 

In the last few week's of my pregnancy, I started a blog of my own to document our journey. I knew that the days after her surgery would be hard and the recovery process would be a long one, I wanted a way to be able to look back at any progress she may have made. Sometimes there would be hard times and my posts would reflect that, you could see it in the way I wrote - short sentences and being very blunt. Some weeks I couldn't believe she was the same baby as the one I'd been crying over the week before because of how much she'd progressed in such a short space.

During the toughest points of her admissions, my blog was my savior. It was cathartic, I could vent my frustration, have a moan, I could share exciting updates and let everyone know how she was doing at the same time. 

Over the years I've been contacted by other parents who have a similar heart condition to Martha, some just like me - wanting to know that sometimes a miracle can happen and these tiny babies make it through despite the odds being stacked against them. I've never met most of these Mother's but we message regularly and their children's journeys are an inspiration to me. I hope that Martha is still an inspiration to them. I hope she can still bring hope to the parents who are now embarking on the journey of being Heart Parents.

2017 I was the least active on the blog that I've ever been, I had been taking my Siblings Project photo each month but I never published the post. I didn't document Martha's 5th Open Heart Surgery and her Pacemaker replacement surgery on the blog. I felt guilty that I hadn't kept a log for Martha's sake. I'd also noticed that I was struggling with my mental health. Martha's current period of stability brings with it an overwhelming feeling of guilt. Guilt for everything she's had to go through just to get here, guilt for all those who weren't/ aren't as fortunate as us. I still need my blog for me, for my sake - not just as an online diary.

Ultimately, the reason why I continue to blog is to raise awareness. Many CHD's can be detected during the Fetal Anomaly Scan. Early detection means a baby has a better chance of surviving. I don't know how many times I can say that unless Martha Grace's heart defect had been picked up at our 20-week scan - we would have brought home our seemingly "healthy" baby and she would have passed away before she was 4 days old. Yes, our journey has been difficult and I wouldn't wish it on anyone, let alone a child who's not even 5 years old yet. But I'd do it a million times over for the chance of another 4 years with my amazing miracle girl.

Ask the questions during your scan:
Are there 4 chambers to the heart?
Can you see the arteries entering and leaving the heart?

Trust your gut instinct, go for the second or third or even fourth opinion. Do whatever it takes so that you can say you did everything in your power and are confident in your decision for your baby and your family.

And if you need to speak to a fellow Heart Mammi...you know where I am.


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