The guilt of inherited illness
Updated: Mar 13
Something anyone with an illness or medical condition, whether it is considered congenital or genetic, will be afraid of is passing it onto their children. The thought of your child suffering from anything is a horrible, but to know they are suffering from something they inherited from you creates enormous amounts of guilt.
I was born with a congenital defect known as an Anorectal Malformation. This is when the anus and the rectum are not formed properly, there are a number of different variations of this condition and different degrees of it and there are also a number of associated conditions which occur in some but not all cases. If you are interested in more information please visit http://www.onein5000foundation.org, there is some useful information on this page as well as other people's journey's with this condition.
I also had a number of other conditions, one a rare teeth condition which triggered my first visit to geneticists to receive genetic counseling. Over the years I would see many doctors and three different genetic counselors and ask them all the same question. What are the chances of passing on my anorectal malformation to my children? Every one of them told me that my child would have no more chance than anyone in the general population which is 1 in 5000. We found this extremely reassuring as they did not believe there was a genetic link, it was congenital condition, an error made when I was formed. What were the chances we would be the 1 in 5000 twice?
The shock when my son was born and we were told he also had an anorectal malformation, I'm sure you can imagine, was enormous. Once the shock died down though, I had an overwhelming feeling of guilt. Knowing he would go through all the pain I went through but also knowing he got the condition from me. I have since found out the incidence in a parent/child situation is actually 1 in 200 not 1 in 5000. All those doctors had gotten it wrong.
Since the day he was born I have felt guilt. I felt like my selfish choice to have a child would now cause him a lifetime of pain. These are feelings I struggled to voice to the people around me. Everyone I tried to mention it too tried to convince me it wasn't my fault so I ended up keeping it to myself a lot of the time. Guilt is not a productive emotion, especially if there is nothing you can do now to fix what has been done or take it back. Nevertheless it is an emotion I still struggle with, especially when my little man is in pain or is going through one of his harder days.
I know that my family don't blame me for his condition and I can only hope when he is older and can understand what has happened, he doesn't resent me too much for it. I'm sure there are many parents around the world in similar situations feeling very similar emotions. There is no switch you can flick to turn this off and make it go away and if I do come up with a better way to handle my emotions around this I will be sure to write a follow up. But for now I can only say, if you are going through this I understand how you feel and you aren't alone.
I think a lot of my posts like this one don't necessarily have any useful advice in them, but I hope they can serve to let other people know that they aren't alone in how they feel and there are other parents out there struggling with similar emotions while their children go through suffering they had hoped to always spare them.