Parental Dilemma

I suffer from a genetic condition known as Autosomal Dominant Polycycstic Kidney Disease (ADPKD) in which cysts develop on the kidneys and other organs. The cysts multiply and grow, eventually destroying the kidneys. In common with a number of other people to whom I’ve spoken, I believed that the condition spread down the female line but that isn’t the case. Every child of a parent who has the defective gene has a 50/50 chance of inheriting the disease.

Our son was born five years before I was diagnosed and whether or not my wife and I would have had any children knowing I had the condition before my son was born may be a subject for a future blog. The dilemma I want to focus on is should you have your child tested for a genetic condition. I spoke to an ADPKD sufferer last week who said they wouldn’t test their child, arguing that it is better not knowing.

As my son grew up, my wife and I regularly discussed the matter of having him tested knowing that it would be his late teens at the earliest before an ultrasound scan would be able to confirm a diagnosis. We were never in any doubt that it was better to know than not know despite the problems that confirmation could bring such as grossly inflated insurance premiums, a life on blood pressure medication and ultimately renal failure. It transpired that he’d inherited the condition and while I wrestled with my misplaced feelings of guilt for passing on the condition we were thankful that he’d been diagnosed some 16 years younger than I was when I was diagnosed. The knowledge gave him an opportunity to adjust his lifestyle and have better blood pressure control in the hope that it may prolong kidney function.

So my question is, and it applies to any genetic disorder, would you test your child or would ignorance be bliss?

 

Profile photo of Rob Finnigan

I’m an ADPKD patient who was lucky enough to have a transplant in 2003 after only eleven months of dialysis. I'm the north-west Patient Advocacy & Support Officer for Kidney Care UK and my interests, other than my role within GMKIN, include sport, music and politics. Follow me on Twitter: @finnigr

3 thoughts on “Parental Dilemma

  • I was told at the age of 15 that I had a “problem?” with my kidneys. However it was at a time when little was known and/ or could be done for someone with CKD. Knowing what I know now I am pro testing. That way there may not be any need for your child to have to go through what you as a parent have had to go through. When my own son said he had certain symptoms I got him straight to the GP for some basic tests. Fortunately he showed clear so he can carry on a normal life and we as parents can breath easy knowing that all is OK. However if the tests had shown up positive we could still breath easy knowing that having caught the condition early then with immediate treatment, progression of the condition can be dealt with.

  • Its probably better for you to know and importantly for the child to be made aware than try to live
    with the misery of ignorance. My opinion for what its worth you came to the right decision.

    TONYJOE.’.

    • We were never in any doubt that we made the right decision and it seems odd to me that people would prefer to live in ignorance. Actually ignorance is the wrong word because they clearly know there is a good chance that a child will inherit the disorder.

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