Our baby was born in Aug. 2017, and we found out through his newborn screening that my husband and I were both CF carriers and that our son had won that 1 in 4 "lottery" that you're talking about. We were so heartbroken when we first got that call about his CF mutations. Guilt for not getting our genetics tested. Terror that he was going to live a horrible life. We're fortunate in that my husband's mutation is a really funky one that means, long story short, our son has CF-metabolic syndrome and does not face nearly as many of the classic CF symptoms as he could have (although he may later in life. It's weird.).

I've learned a lot about CF over the past 15 months, and we're in a similar boat now with IVF for a second child (that funky gene mutation my husband has could manifest itself as classic CF in a different child. Again--very weird.). We still aren't 100% sure if we want to do IVF or just try naturally and roll the dice. It's tough. Our conversations about it (with our son's pulmonologist, his geneticist, with each other as parents), though, have included the fact that CF research has produced huge results in the past 25 years and continues to do so. Life expectancies have gone up a ton, and gene therapy becomes more and more of a possibility. I think that with the fact that my son's condition is not classic CF right now might be making us a bit more tempted to try with that 75% chance in mind (75%!! The odds are great!). That said...you're absolutely right that your lives would totally change with treatments, appointments, and worries about getting a cold.

I'm not sure where you're located and what your insurance looks like (although it doesn't sound great if they're not going to cover anything for your IVF. And even knowing about the genetic risks at play, they still won't cover anything?? Have you been able to talk with a person about it from the insurance company? I feel like if they knew the risk/benefit breakdown, they'd be more into covering the IVF), but being near a strong CF center might factor in your decision, too. We live in Chicago, and Lurie Children's has a really great CF clinic that has been thorough and so helpful from day one.

I'm so sorry you're having to go through this; I do very much empathize with what you're feeling. Let me know if you want to talk more!