A fellow CF mum contacted me recently about an interesting topic that I thought I would write about.
How would you feel if you knew that you were directly responsible for your child’s medical condition? This is something every parents who has a child with a genetic condition will surely think about. A part of the emotional processing is wanting to blame someone. It’s completely normal to feel like someone is at fault.
With cystic fibrosis, a patient needs to have the defective gene from both parents.
My husband and I had no idea that we were genetic carriers until my son’s diagnosis. I didn’t really give it much thought at first about the fact that a part of me was to blame. My son was extremely sick at diagnosis, so it took my focus away.
In all honesty, I have never really blamed myself for my son’s CF. As far as I am aware, neither has my husband (hard to say, as he is one to keep thoughts like this close to the chest) There was no way of preventing it from happening, and I was accepting that it has happened, we just need to deal with it now.
I have other family members who, despite the fact they aren’t going to have more children, have considered getting themselves tested to see if they are genetic carriers, just so they know where it came from. I honestly feel that if these people were to undergo the testing, it would be giving them fuel to blame themselves, when there is no reason to. What happened, has happened. There is no reason to go around pointing fingers.
At the time of my youngest son’s diagnosis, my older children were starting the process of being diagnosed with Global Development Delay. This is when I started wondering what was wrong with me. I had three children who were having development issues (and I have a history of development issues in my family). While the doctor isn’t considering it, surely there is some sort of hereditary reason for it? One child with problems, it happens. Two children, that’s really unlucky. Three children…there has to be something going on! A lot of these feelings are because of the frustration of not being able to find a diagnosis (there are names for everything these days…cant we find something?) therefore, we can only access a limited amount of resources to aid their development…but that is another subject.
I have said these to a lot of other mums who have gone through similar things (such as premature labour, gestational diabetes, children with medical conditions) there is nothing that you could have done. Unfortunately, the odds and percentages sometimes don’t work in your favour. You just need to put aside the guilty feelings and concentrate on what is important…the small humans that create chaos in your life!
I hope this makes sense to you readers, and you own opinions/experiences are encouraged.