WWYD - cystic fibrosis carriers

[mnkygrl79]

We found out after my son with diagnosed with cystic fibrosis that my DH and I are both carriers I SO don't feel done having children (I have 2 now) but don't know what to do in the arena of TTC. Any children that I have have a 25% chance of having CF....is it worth that risk??? I just don't know! AHHHHH!!!!! I LONG for YEARN for more children, and I don't think DH would go for adoption, and truthfully, I don't know if it's for me, either...I also don't think either of us would be into sperm donation.

SO...WWYD?

[LibbyLou]

Our best friends just found out that they are both carriers for cystic fibrosis. They are planning on using IVF where the embryos are screened for the disease before they are implanted. I'm not sure what your financial situation is, but it is an option.

[mnkygrl79]

I had thought about that - but know that is will be expensive - I don't know exactly how much though - and I doubt I could get insurance to cover it

Also, with IVF, I'm afraid of multiples

But, it is definitely an option.

[mommy2maya]

Originally Posted by LibbyLou

Our best friends just found out that they are both carriers for cystic fibrosis. They are planning on using IVF where the embryos are screened for the disease before they are implanted. I'm not sure what your financial situation is, but it is an option.

Having known very closely a set of sisters who both had the disease, this is the ONLY way I would consider having more natural children if both my husband and I were carriers. I, myself, couldn't consciously, knowingly, risk passing this disease on to my children. I'd say this is a very very personal decision, and you and your husband are the only ones who can make it. Knowing intimately the pain that the disease causes, both to the child and to the family, I wouldn't take the chance. At the very least I'd urge you to become more intimate with everything that the disease entails before making a decision.

I so understand the longing for more children, and am so so sorry that your family and son have to walk this path.

editing to add that I am a carrier, and it was TERRIFYING waiting to find out if dh was a carrier. At the time, ds was a toddler who was ALWAYS sick, couldn't get rid of anything in his chest/ears. That was even more terrifying to me, because of course I thought immediately that he must have cf.

[FancyD]

If another child with CF is not acceptable to you, I would screen embryos. My friend's son has CF, and I know how stressful it can be.

[RoadWorkAhead]

Personally, since IVF would never have been in our budget, if DH had been a carrier (I am), we'd have done amniocentisis and selective termination or adoption. I not only carry, but carry the deadliest form. My child's life expectancy would have been late teens. With DS (Different bio dad), I did undergo amnio, and I was prepared to terminate, but I am pro-choice so while not easy to think about, I am not strictly speaking against it.

[bobica]

I'm with Kierdan'sMom. I'm a carrier (which i didn't know until i was 16 weeks with dd). Thankfully, dh is not. we would have either screened if we could afford the IVF route, amnio as early as possible, or, most likely, not have had more children.

I'm so sorry. This is a very difficult decision. You don't have to know now, so take your time to figure out what will work for your family.

[mnkygrl79]

does anyone know how much the IVF with screening costs?? It sounds like something that will take years to save up for.

[ChattyCat]

Probably in the neighborhood of $15-20K.

In the long run, I imagine that it's much less expensive than the healthcare bills and emotional upset of a child with CF.

To avoid multiples, you can transfer just one embryo and freeze the rest. With dd, we only transferred one embryo and she took!

[Gray's Mommy]

One of my close friends has CF & out of the 4 siblings, 2 have CF & 2 don't. Her parents felt the benefits outweighed the risks & all four are still living. My friend has had a double lung transplant & is doing great. Her brother (with CF) has such mild version-it is almost like he doesn't have it.
Many prayers for your decision.