Adding to our Family
No, this is not a pregnancy announcement. As much as I love Sienna and being a mom, we are so not ready to expand our family. But it is on my mind (all the time!)...so I figured I'd share some of my thoughts on the topic.
For most of you, the decision to add to your family is a fairly easy one. Do we want another baby? Yes. Are we ready for another baby now? Yes. Great, here we go!
For us, and any other family with a known genetic disease, it's a tough decision to make. Maybe one of the toughest. The "yes" that comes so easily to other parents, comes with a whole slew of follow up questions for families like us.
Do we want another child? Yes...someday. I never envisioned Sienna as an only child, and I don't think it is fair to let her diagnosis change that. To be honest, I want her to have a sibling more than ever right now. A sibling who can be her protector, confident, best friend, and ally.
Do we want another baby? Yes. Are we ready for another baby now? Yes. Okay....
Do we conceive naturally and risk the chance of another child with Cystic Fibrosis? Can we emotionally handle another child with CF? Can we financially care for another child with CF? At least the odds are in our favor on this one. When two parents are carriers of a CFTR mutation, there is a 25% chance their baby will have CF, 50% chance the baby will be a carrier (have only one mutation), and 25% chance the baby will be completely unaffected. That means there is a 75% chance of no CF!
Do we explore the option of IVF with the ability to only implant non CF embryos? Could we afford to even do something like this? Is it fair to spend tens of thousands of dollars to rule out CF, when we could use that money towards Sienna's care? This option may rule out CF, but it does not guarantee a healthy embryo. Plus, it's selective reproduction and I'm not sure I agree with it. Taking CF away from Sienna would literally mean changing her genetic makeup. I know that CF will always be a part of her, but it will not define her. It saddens me to think that this option is telling Sienna we wouldn't have given her life if we knew she had CF. I wouldn't change her for anything in the world.
Do we adopt? Do we foster? I'm open to this as I'd love nothing more than to love a child in need of a family. But, would we be considering adoption or fostering if Cystic Fibrosis was not a possibility for our own child? Maybe. It does make me feel like we are letting CF rule our life though; that Sienna's CF diagnosis scared us enough to stop having children of our own. And what's to say we would adopt/foster a healthy child? Disease can strike at any time and without notice.
There are so many questions and decisions to make.
So I think of it like this - we had no family history of Cystic Fibrosis. We didn't know we carried these recessive genes. We had no idea about that 25% risk to our future child. The ONLY thing that has changed from that first decision to get pregnant to now, is that we are better informed. Better informed on what Cystic Fibrosis is and better informed on the risk of passing it to another potential child. Now we have to decide what to do with this information.
But, lets also remember that no one can guarantee a healthy child. A spotless genetic background doesn't mean something isn't hiding in your bloodline. A healthy newborn doesn't mean cancer can't strike later in life. Whether you are aware of the risks or not, it is a gamble you take every time you conceive a child. The Genetic Disease Foundation says there are over 6,000 genetic diseases. Who knew?
So what I'm asking of you family and friends, is to support whatever decision we end up making when that time comes.
For most of you, the decision to add to your family is a fairly easy one. Do we want another baby? Yes. Are we ready for another baby now? Yes. Great, here we go!
For us, and any other family with a known genetic disease, it's a tough decision to make. Maybe one of the toughest. The "yes" that comes so easily to other parents, comes with a whole slew of follow up questions for families like us.
Do we want another child? Yes...someday. I never envisioned Sienna as an only child, and I don't think it is fair to let her diagnosis change that. To be honest, I want her to have a sibling more than ever right now. A sibling who can be her protector, confident, best friend, and ally.
Do we want another baby? Yes. Are we ready for another baby now? Yes. Okay....
Do we conceive naturally and risk the chance of another child with Cystic Fibrosis? Can we emotionally handle another child with CF? Can we financially care for another child with CF? At least the odds are in our favor on this one. When two parents are carriers of a CFTR mutation, there is a 25% chance their baby will have CF, 50% chance the baby will be a carrier (have only one mutation), and 25% chance the baby will be completely unaffected. That means there is a 75% chance of no CF!
Do we explore the option of IVF with the ability to only implant non CF embryos? Could we afford to even do something like this? Is it fair to spend tens of thousands of dollars to rule out CF, when we could use that money towards Sienna's care? This option may rule out CF, but it does not guarantee a healthy embryo. Plus, it's selective reproduction and I'm not sure I agree with it. Taking CF away from Sienna would literally mean changing her genetic makeup. I know that CF will always be a part of her, but it will not define her. It saddens me to think that this option is telling Sienna we wouldn't have given her life if we knew she had CF. I wouldn't change her for anything in the world.
Do we adopt? Do we foster? I'm open to this as I'd love nothing more than to love a child in need of a family. But, would we be considering adoption or fostering if Cystic Fibrosis was not a possibility for our own child? Maybe. It does make me feel like we are letting CF rule our life though; that Sienna's CF diagnosis scared us enough to stop having children of our own. And what's to say we would adopt/foster a healthy child? Disease can strike at any time and without notice.
There are so many questions and decisions to make.
So I think of it like this - we had no family history of Cystic Fibrosis. We didn't know we carried these recessive genes. We had no idea about that 25% risk to our future child. The ONLY thing that has changed from that first decision to get pregnant to now, is that we are better informed. Better informed on what Cystic Fibrosis is and better informed on the risk of passing it to another potential child. Now we have to decide what to do with this information.
But, lets also remember that no one can guarantee a healthy child. A spotless genetic background doesn't mean something isn't hiding in your bloodline. A healthy newborn doesn't mean cancer can't strike later in life. Whether you are aware of the risks or not, it is a gamble you take every time you conceive a child. The Genetic Disease Foundation says there are over 6,000 genetic diseases. Who knew?
So what I'm asking of you family and friends, is to support whatever decision we end up making when that time comes.
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