Monday, November 15, 2010

Carrier or Not - That is the Question

Two Thursdays ago, we had a knock at our door and when we opened it, no one was there. But at my feet, I saw a little white box. A white box that seemed to be holding a big part of my future in it. A little white box from Ambry Genetics. It was the box that held a tiny little vial, for me to fill up with my blood, and send off for the full test (read: the most extensive test there is today, testing for 99% of mutations) to see if I am a carrier for CF. As some of you may have read in previous posts I don't yet know if I'm a carrier for CF, as Ronnie and I were waiting to have me tested.

What does it matter if I'm a carrier you may be thinking? One word: Babies. We know we want to have children. And there are a TON of ways for us to start our family, but the way that we have to go about creating our family really depends on if I'm a carrier. We'll write a longer post later regarding some of the meat and potatoes that go into the following statement, but for the sake of keeping this post short(ish), I'll just make the statement for now: Ronnie and I won't have biological children if I'm a carrier. The main reason - we're not willing to take the risk of having a child with CF.

Needless to say, I'm pretty nervous and excited about getting the test results back. I'll be really honest. I'm hoping that I'm not a carrier simply because it leaves us with more options. I feel pretty comfortable with all of the options that are out there, but being a carrier somehow feels like instantly there are a few doors shut which to someone that wants to be a mommy really BAD, hurts a bit. So we shall see. Again, in another post I'll go into all of my emotions around all of our options, but we're not there yet :)

Once we know if I'm a carrier or not, we'll start to process through all of our family making options. As I'm sure many of you know, there are a TON of ways to create a family for a CF couple (which I guess I should mention, we've already ruled out the natural, "oops I'm pregnant" way based on a test Ronnie had done years ago), from IVF to adoption and pretty much everything in between. Again, we'll dive more into all of our thoughts on each option at a later date, when we actually get to that stage in the process. For right now, we are just getting past step 1.

We know that it can be a LOOOONG process for CF couples to create their families, and we're ok with that (ok, Ronnie's more ok with it than I am...but I'm bracing myself). We don't want a baby tomorrow or even in the next 6 months. But we know that whatever route we're going to take, we'll want to carefully and prayerfully consider it. So this is just our way of arming ourselves with all of the facts before starting the process of researching, investigating, praying, and visiting doctors or lawyers.

We took some videos so you could be a part of the process. It was surprisingly easy. You just go to the Ambry Genetics website and request a test. It shows up in the mail. You take the box (with blood vial inside) to the doctor. They fill out a form. You fill out a form. They take blood. You take a pre-addressed and paid for envelope to FedEx with the box and blood inside. You hear back in 15-35 days.

Tomorrow is day 15...

Comments (10)

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praying that your family comes together in God's perfect timing and way. We were blessed with Kaleb and Hannah, both "oops" pregnancies, one with CF, one without. We want more children, but we are on the same page as you, not willing to take that risk. With Kaleb, we didn't know and with Hannah we got lucky. Don't want to press that luck. Praying for you guys during this time!
We had the "CF Amplified" screening done last year on my husband. It came back that he was not a carrier, which oddly enough was very anti-climactic. I thought maybe it'd be this huge relief, but instead it was like, "okay. well, that's good to know." We realized that it was just one little piece in a bigger process that involves a lot of praying and decision making. Here's praying that no matter how long your journey or where it may lead, that the Lord would work mightily through it.
You guys are taking an exciting step! I will be praying! Praying the Lord guides and directs you in his plan for kiddos. We are implanting our adopted embryo this week :) You are right there are many ways to go about having kids and I will continue to press in in prayer for you both that the Lord would lead you in his direction! You guys will make fantastic parents! FUN TIMES AHEAD!!! So exciting!!
Praying that you are not a carrier so you have all of the options available to you. Thankfully, my husband was found not to be a carrier, so we were able to have two healthy bundles of joy!
Mandi, it's so good to hear where you and Ronnie stand on kids, I've been wondering. I think you guys are making the right choice and taking it slow and finding all your options. I have to ask why you won't take the chance of having a CF baby. Is that because you don't think it's fair to pass on to a child? It'd be great to hear your imput and thank you for being so open!
1 reply · active 750 weeks ago
We'll post a long blog about this later, but yes, the gist is that we don't want to take the risk of having a child with CF!
Thank you for sharing Mandi. I'm a CFer and we don't know if my hubby is a carrier or not. Having children is a road that we're not ready to travel down just yet but one that is in the future. Honestly the thought of not having kids (either from him being a carrier or me not able to carry a child) scares the heck out of me. Beacuase of that exact reason we havn't had him tested to see if he is a carrier. That'd be just to much for me to handle right now. I wish you and Ronnie the best of luck as you start down this road. I look foward to hearing more about your journey.
1 reply · active less than 1 minute ago
That's why we waited to. We said that we wouldn't burden me until we actually wanted to start down that road. And I'm right there with you, the thought a not carrying his child tears me up a little bit in side. But day by day I'm learning that being a mom and dad has nothing to do with who's DNA makes up the baby! The thing that bothers me most is that I've always dreamed of carrying a baby, I just want to be pregnant. But again, sometimes you have to let your dreams evolve. And I know that the heart break of not being able to carry a child would subside as soon as I was holding our baby in my arms and in 5 years, 10 years, that 9 months I missed out on will seem like a blip in the bigger picture of our kids.
Awesome!
Hi Mandi! My name is Katie and I am 32 years and have CF. I have a 6 year old daughter who is mine. I carried her through nine months of pregnancy with my CF. I, too, am a big time runner like your husband. When I found out I was pregnant, my husband had genetic testing and was not a carrier. Our daughter is healthy and happy. The strain of pregnancy wore on my health and my PFT's have yet to return to their pre pregnancy state. The one good thing about you and your husband is that he won't have the stress on his body that a pregnancy can cause. Whatever happens, I wish you the best of luck and that your journey is a prosperous one.

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