My baby is not a pizza.

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Today I am angry. Angry in a good way though, if that is possible. Angry in a way that makes me want to do positive things.

This afternoon I asked my partner if he thought Bump was in pain because of his cyst. He said he’d wondered that too. So, as I do with these things, I “Googled” it. I was expecting to find either highly varied answers, or just nothing at all due to the limited information available on arachnoid cysts. What I wasn’t expecting was to find one woman’s honest account of living with an arachnoid cyst. I have seen the website before, but not read the whole thing. Google search though brought up a specific page of the website, it was her writing about what to expect with people who suffer from this. Granted, information like this is helpful. The part I don’t find helpful is telling you to seriously consider an abortion if you find out your unborn baby has one of these cysts and to “make another baby that will be healthy”. This is what led to the title of my blog, when I told my friend what I’d read his response was “yeh cos its dead easy, just order one up like a pizza – one baby please, hold the problems I don’t like those.” I agree with what he says. You don’t get rid of a baby simply because it’s not considered “healthy”. What is classed as “healthy” anyway? Where would you draw the line on this?

After getting myself wound up about what she’d said, I clearly thought I needed to wind myself up even more so I did a search on her. Another page I found just left me speechless – whilst talking about doctors performing surgeries she has said “Please… if you are reading this and you are pregnant love your baby enough to keep it from being tortured in this manner and terminate the pregnancy.”

If we all terminate our pregnancies because of these cysts, then how are research/medicine/surgical procedures meant to advance? How are people meant to become more aware of this condition if we just get rid of anyone who might suffer from it? Or is it babies that have cysts in a certain position/place that we need to get rid of?

Personally, I don’t think she should become a motivational speaker.

Whilst I appreciate I have no understanding about what she goes through, and other people will find what she writes useful, I wonder if she has any understanding about what it is like to have to decide whether your unborn baby gets to live or die.

I don’t want to be told to get rid of my baby if I love it. If we decide that our baby will have some quality of life and want to give him that chance, based on what we’re told by the doctors, does that mean we love our baby less?

I don’t want negativity when having to make the biggest decision of our lives. I want more positive stories, like the ones about Laughlan Dougall and Jade Lucas who still enjoy their lives despite suffering from arachnoid cysts.

This lady has done a lot of work and research for people with arachnoid cysts, I don’t dispute that. Perhaps, though, she should not publish her advice on how to treat unborn babies. Especially not when there are people like Laughlan and Jade around. I’m pretty certain they don’t wish their parents had terminated them.

With this in mind, I have decided to start my own website/foundation. It will be positive and informative and hopefully offer some guidance and comfort to parents of unborn babies who are going through what we are now. It will show stories of people who are living with this. Hopefully it will help with more research into these cysts.

http://www.dailymail.co.uk/health/article-2198751/Arachnoid-Cyst-Schoolboy-Laughlan-Dougall-undergone-40-operations-cure-year-headache.html

http://www.dailymail.co.uk/health/article-2062237/Jade-Lucas-20-amazing-recovery-doctors-operate-life-long-brain-tumour.html

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2 thoughts on “My baby is not a pizza.

  1. I don’t know what to say as obvioulsy it is such an immense thing. Your post strikes me as brave and positive and I agree with everything you say. I would not find it helpful to read the comments on the other lady’s post you read either. However, perhaps she is dealing with her own pain in her own way, though, like you, it would make me angry to read those types of comment. (I do remember getting angry when a locum doctor asked if I wanted to keep the baby I was expecting).

    My son has what is termed “a life limiting condition” (although one that may be very different from your situation or the one the other person was posting about.) It was a bolt from the blue, so we didn’t have time to prepare for it (retrospectively, in our case, that may or may not have been a good thing). I found the lack of information on how severe his condition would be frustratrating (again, restrospectively, that may have been a good thing).

    We have found a vast range of experiences, and lots of sources of hope and positivity. Of course, there are also the stories of loss and heartbreak. I gave up googling as I found it too depressing (hospital warned me that alot of stuff on the net was out of date. I limited the information I took in in the early days. Since then I have focused on positive stories and keeping up-to-date with real medical research and community).

    I am totally convinced that my son has enriched our lives (and others) immensely and I put my energies into making sure he has as long and fulfilling a life as possible. There are lots of reasons to be positive. Though it is, at times, hard not to feel sad, overall the wonder and beauty of having a special child makes it all worthwhile. I have found that everything has become more poignant, feelings run closer to the surface. I appreciate life more (which in turn has overall good, but some bad aspects, my tolerance for intolerance and ignorance is even worse than it used to be!).

    Be strong, look after yourself too (funny how you can forget this when you are so focused on looking after another), You sound like you’ll make an amazing parent and will give your child the love (s)he needs.

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