This post is for Andrea and anyone else wondering about having children after learning of a PKD diagnosis. Andrea mentioned in her comment that her husband was diagnosed six years ago and they are questioning whether to have children or not.
Hi Andrea, I'm approaching 31 so I'm not too far away from you and I'd ideally love four so the clock is ticking for me too! No one can tell you what to do in this situation. It is a decision you and your husband will have to make.
However, I will tell you how my husband and I came to the decision that yes we are going to try to get pregnant.
I had already been diagnosed with the disease last fall but was still awaiting more test results to determine the current state/functioning of my kidneys. I mentioned to my husband that perhaps we should not take the chance of passing the disease on to our children and should adopt instead. I couldn't take the idea of knowingly giving my children a disease that could kill them.
My husband is quite a rational person and this was his response, "How do we know what the adopted kid's medical situation is? There is a 50/50 chance of passing the disease or the chance of who knows what... Plus, by the time any child of ours has to face it there will be a cure." Now granted, that is very optimistic but we both have always dreamed of becoming parents and would like the opportunity. And whether or not our children have PKD I absolutely hope there will be a cure soon!
Now, the discussion wasn't over completely because we still didn't know what was the state of my kidneys. The tests came back (posted in previous entry) and my kidneys were lookin' good! So, I asked my nephrologist, "If I was your wife, would you recommend my getting pregnant?" You see, the other concern besides passing the disease on to the child is that the pregnancy can be hard on a woman who has PKD. I mean, pregnancy is hard on your body anyway and then you introduce a life-threatening genetic disease and things can get pretty interesting.
Well, my nephrologist said this, "Yes, you will automatically be considered a high-risk pregnancy but based on how healthy you are right now and how well your kidneys are doing I don't see any reason why you shouldn't try to have children." Now, here's the part where he really got me. He said, "The amount of joy you will bring in to your lives far outweighs the risks you will be taking." Of course, he then followed up with a disclaimer that if my health changes he reserves the right to change his opinion.
SO, my husband and I are actively trying to get pregnant (no luck so far). If my health changes we will re-evaluate the situation at that time. Oh, and I have resolved myself to the possibility that I may only be able to have one natural child depending on how hard the pregnancy is on my body. There's always adoption!
p.s. - a man named Bob has written a few comments on my blog, you should check out his website because it is the story of his wife's battle with the disease and what happened to them during the course of their pregnancies - they are obviously both very strong people
Thursday, February 14, 2008
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8 comments:
Hi again - thanks for responding.
You raise a lot of the same points that we have raised ourselves. It stands to reason that by the time our kids are our age, there will have been major advancements in the treatment of PKD, and possibly (hopefully!) even a cure will have been found. Logically, I know that our child could live a very normal life for many, many years. My husband has had only a couple of episodes of pain (when the cysts burst) in the past 6 years, so all things considered he is going quite well.
I think my husband struggles more with the idea of passing the disease on to a child than I do, probably because he knows better than I how it feels to be living with this disease. And when I say "how it feels", I am more referring to the emotional feelings, not the physical symptoms.
Hopefully we wil be able to resolve these feelings soon and come to some sort of a decision.
Thanks again for responding to my post. I look forward to reading your blog and hearing about how things work out for you. Even though I can't totally relate to what you are going through, I hope it's okay if I add my two cents worth once in a while.
Take Care!
Hi Andrea,
Thanks for providing some reassurance that my husband and I aren't missing any angles in this discussion. It always feels good to get that kind of support.
Actually, I would really love to hear your two cents. :) I know very well how I feel about having PKD but have no clue how my husband feels about his wife having the disease. I wonder if it has affected him so your perspective would be interesting.
Thanks for making me feel important enough that you would keep up with my blog!
Hi again, Pugilist. I'm happy to see you've gotten your blog active again. I can definitely relate to the tough choice about whether or not to have children. As you know from our blog, Jeanne and I made the decision to go ahead and have children - twice, really, as one pregnancy was pre-transplant and one was post-transplant. Of course, this is a very personal decision, so what has been the right choice for us may not be the right choice for others. But, what is very clear from your post is that you are making a well-informed decision, so it is probably the right one.
I am really glad to have stumbled across your blog because you are, for the most part, at the same stage in your life and with this disease as my husband is. That is not to say that I am not interested in what other people who are living with PKD have to say; we've learned a tremendous amount from reading about other people's experiences.
My husband and I attended the PKD Foundation's annual conference a few years ago in Minneapolis. We had the good fortune to meet some very wonderful people and also take in some very interesting seminars. There were many well-respected nephrologists there to explain the disease, discuss current research studies and answer any questions from the group. We would definitely attend again - just waiting for it to come back around our neck of the woods again. :)
We met one person in particular who told us something interesting. He said (paraphrasing here) that with the known rate of spontaneous mutations of the gene responsible for PKD, even if the disease was wiped out completely (by those who carry the disease choosing to not have kids and not pass it on), the spontaneous mutations alone would, within a matter of a few generations, cause the number of people who have PKD to return to (or closely approach) the current level.
Knowing this makes me wonder if we are over-thinking the issue of possibly passing this disease on to a baby. There are no guarantees of anything, no matter how hard you try to control things. Maybe I could consult one of those Magic 8 balls and get a more definitive answer. *L*
Interesting thoughts from Andrea. However, I've been really skeptical about the "known rate of spontaneous mutations of the gene responsible for PKD". Since only about 50% of people with ADPKD reach kidney failure, I wonder how many "spontaneous mutations" are really children of a parent who had PKD which went undiagnosed or misdiagnosed. So, I'm suspicious that the mutation rate may be somewhat overestimated.
My wife is a good example of this. She has been diagnosed with ADPKD, but neither of her parents have been, so the assumption is that she is (as I like to tease her) a mutant. However, since her parents have never actually been tested in any manner for PKD, we really don't know for certain whether or not she mutated or inherited.
All that, of course, has little to do with the decision to have (or not have) children. None of us have any obligation to society to prevent the passing along of a genetic disease.
WOW! That's pretty interesting information, Andrea. It would resurface after only a few generations?? I would be interested in learning more information about that.
It's funny that you mention "there are no guarantees, no matter how much you try to control things". That was a huge lightbulb moment for me during my diagnosis... I can't control this. Holy cow! That's pretty tough to swallow when you're someone who likes to control everything... but you know what? It's been surprisingly liberating. It's actually ok to be out of control (sometimes).
Magic 8 balls can be quite reliable. I recommend them highly. :)
http://en.wikipedia.org/wiki/Magic_8-Ball
Hi again! Okay, so I just now looked at your main page in your blog and I read more about how you are trying to have a baby. :) I am sorry I didn't see this sooner (I had asked if you had any children yet in the last comment I left in another post). I need to get better at understanding how blogs work apparently! :) I just wanted to say I'm glad that you are trying too.
Andrea, my name is Gina and I posted a reply to a question that you posted about having children when one parent-to-be has PKD. I was originally posting as "anonymous" because I didn't realize I could just type in my name (not too bright!) I just wanted to say that if you and your husband do decide to have children, I wish you the best. In brief, I've only known that I have PKD for about three months and my husband and I have decided that we will still definitely be trying... Best of luck to you.
Hi Bob!
Yes, I tend to question the rate of spontaneous mutations as well, and you are probably correct that the rate is likely overestimated. In fact, I would think that the number of people living with PKD is underestimated, simply because we know that people are dying (possibly from health issues unrelated to PKD) before ever being diagnosed with the disease.
Unfortunately, all of these numbers are somewhat speculative and who knows what is accurate and what isn't? And to be honest, knowing what the numbers are or aren't still wouldn't make decision-making any easier (for me). Thanks for sharing your comments - it is nice to know that we are not alone. (P.S. I'm sure your wife loves the mutant comment! *L*)
Take care!
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