Tuesday, September 13, 2011

Got Me Thinkin'

So, as many of you know, I work as a teaching assistant in an elementary school. Currently I'm working in a Kindergarten class with two special needs students. One of the students as a chromosomal deletion which affects his body in several different ways. This student also has sibling with the same chromosomal deletion. A teacher told me today that the boys' mom is a carrier of this deleted chromosome which made her pass it on to her children, and then she said, "Which means she knew that her kids were going to have this" - which immediately got me thinking about CF and my decision to have kids....
(By the way - this teacher who said this is a good friend of mine and knows that I have CF, and I'm sure she didn't make the correlation, so please don't comment anything negative towards her.)

It just got me thinking: Am I a bad person because I have CF and I want to have my own kids? What if I pass it onto them? Are their future teachers/educators going to look down on me for passing it on because I knew it was a possibility? I know the answers to these questions should be "no," but it's hard when they're constantly running through my mind. I was just thinking about the possibility that if/when we have children, I can pass CF onto them, and that I don't want people to think that I'm irresponsible or selfish for wanting my own kids. But then there's a part of me that thinks of this saying that we use in Kindergarten all the time, 'you get what you get, and you don't throw a fit'. I know that we shouldn't care what other people think or say, but sometimes I just do. It's this constant battle I mentally face when I think about the future. Drives me crazy sometimes!


  1. I think that if it was 100% certain that your child would get CF then it would be different and it would be a lot harder of a choice. But you don't for sure if your child will have CF or not so I do not think it is selfish of you at all to have a child of your own even though you have CF. There is a chance that your child will be perfectly healthy and happy and it would be a great feeling to have a child of your own. And if your child does end up with the CF gene you are there to support them and help them through it. Although it will be difficult as I know you know the struggles of having CF, they will learn to manage it and you will make them stronger. So I like the idea of you get what you get, you are who you are. It is not selfish at all to want a child of your own. There is no certainty that they will or will not have CF, therefore, it is not as if you are giving it to them and you are deciding the outcome. If that makes sense.

  2. And who knows, they might have a cure soon. They are getting closer and closer each day. :)

  3. I agree with Amanda a lot on this, but I completely understand the internal struggle you are going through. Even after making the decision to TTC, this ran through my head often and I still sometimes think about it. I look at this way: My life has been so incredibly blessed in ways I can't even begin to describe. I love my life and will do anything to increase my time here on this Earth. I have more moments that have warmed my heart and touched my soul than I can count. I'm so very glad that my parents had me, CF and all. Even after me, they wanted another child (and I was diagnosed at birth).

    There is NOTHING selfish about you wanting to bring a life into this world! I also think that between all the research being done on CF and all of the current medical treatments, a cure is just around the corner.

    Also, if your child ends up having CF, he/she will grow up understanding treatments and not feeling alone with this disease. I think that would make it easier on a child, but that's just my opinion. Hope it helps you reconcile your thoughts.

    P.S. I also love the saying "You get what you get, and you don't throw a fit." Beautiful! :)

  4. I came over here from Mrs. Murray's blog! I have run into this question a LOT in the CF community over the years, both from carriers and from CFers. The answers are personal and range the spectrum... some think you shouldn't have any kids if you know you carry the gene, some think it doesn't matter, and there are plenty of opinions in between. I come from a family of 6, and my parents went on to have 2 "Russian roulette" (their term for playing the CF odds) babies after me, so that probably shows where I stand!

    Have you had your hubby tested to see if he carries the gene? We had my hubby tested before we started TTC. I have nothing against bringing a child with CF into the world, but I know that my health is fragile enough that handling a well child will be a real challenge, let alone a very sick child. So, with that in mind, we knew that we would do what we could within reason to make sure our child didn't have CF. We didn't do the full Ambry genetic testing for my husband (LOTS of money!), but we did do the common 32-mutation test panel. He didn't have any of the 32 most common caucasian genes. He still could be a carrier, but the odds of him being a carrier are something like 1 in 208, which makes the odds of us actually having a CF child something like 1 in 400... and at that point I figure, if we have a kid with CF it was OBVIOUSLY the Lord's will for us!

    Anyway, just wanted to "introduce" myself and add my two cents to the discussion.

  5. This is a great post and one I have though about a LOT. I have so many thoughts on this that I will try to keep this short and organized. My husband got tested, but like Cindy we did not do the full Ambry due to cost factors. I thought for a very long time that i may be selfish for wanting children and had mother's guilt before my child was even conceived. I was struggling with this a lot last year when all of the sudden we got a student in class that was severely emotionally disturbed. It got me thinking about all the cases I have seen in my short "teaching" career. The neglect, the cases that required CPS intervention, the hard lives of some of the students I have encountered. I realized that regardless of who my child is and what challenges my child may face I will be a loving giving mother who will love her child more than anything on this Earth. My child will have an amazing upbringing surrounded by an abundance of love and care. How can people call that selfish? You will be an amazing mother and a dedicated, loving, giving mother, that loves their child regardless of health issues or other challenges is selfless not selfish.

    Great topic to bring up!!

  6. Thanks ladies, for all of your kind words!!! I really do appreciate it! :-)
    Cindy, it's nice to 'meet' you too and I'm glad you found my blog. I love when I have new readers.
    Emily, thanks so much for that comment. You're absolutely right about the students, I never thought about it that way.
    Cindy & Emily - if you don't mind me asking, how much was the CF Genetic test that your husbands did? It'll probably vary a little depending on where we live, etc, but I'm just curious about an average amount.

  7. Colleen, I don't remember the exact cost of the test, but I think it was somewhere around $800. The insurance picked up most of the cost, though. We did have to pay about $500 because we hadn't met my hubby's deductible yet (we almost never do... mine, on the other hand, is usually met in about one month!). Some people can get their insurance to pay for a 99 mutation test, but ours would only cover the 32 mutation test. Initially I did not feel like that was enough, but my CF care team explained to me that for caucasians, the 32 mutation test is usually plenty - it's VERY rare for them to have a different gene. And even Ambry says that the 32 mutation test takes your risk of being an undetected carrier down to something like 1 in 208! So I felt safe with those odds.

  8. I had the same worries that you do about having a child, because I knew that if my husband was a carrier, there would be a 50% chance of my child having CF. I wasn't sure that I wanted to take that risk, so my husband got tested, and he is not a carrier. I cannot tell you how good it is to know that if/when we are able to have children, they will not have CF. There is no chance. They will be a carrier, and I will explain that to them when the time comes so they can make decisions for their lives. There is such a peace in knowing that. I want a child of my own more than anything, and finding out for sure really took a huge weight off of my shoulders. And Eldon got tested before we got married, but I'm pretty sure his insurance covered most of it! :) Good luck with everything.

  9. Sorry for the late response. My clinic was able to get a deal if they did it right there in the office. In fact my CF nurse is the one who took his blood. We did it before we got married and I was only subbing so I did not have insurance at the time (I did get free CF health care from the state- I love CA, but they wouldn't cover the test). It was around $350.00 and it was only for 97 mutations. My husband is Hispanic which has a lower incident of CF although the detection rate is slightly lower than those of Caucasian, African American, or Ashkenazl Jews. Both my CF doc and my high risk OB said that the 97 panel should suffice. It still makes me nervous and I am still considering the full range test, but it is SO expensive!!!