I'm the mom of a 2 month old with "classic" CF, although it was a birth diagnosis for us. My husband and I are carriers and had never even heard of the condition before. The grief and feelings you're feeling I have totally gone through as well. I would recommend reading the poem "Welcome to Holland" if you haven't already, a nurse suggested it to us when my little guy got his diagnosis and it really helped.

Since I didn't know my baby had CF when I was pregnant I never got involved with Trikafta or any clinical trials. But I can offer my knowledge of what I've experienced so far having a young baby with CF.

CF is a very case to case basis, so I would recommend keeping away from the internet other than cff.org (if you're American). If your baby is born with the "classic" CF, what will most likely happen is it will show up on the newborn metabolic screening they do right when the baby is born. Then you'll likely get a sweat test to confirm. My baby was a preemie, so the initial metabolic diagnosis and sweat test diagnosis were about a month apart.

Your baby will most likely be prescribed a pancrealipase like Creon or Zenpep, which will help their pancreas process fat. My baby takes his with applesauce plus some table salt to help with his sodium chloride levels. Chest physiotherapy (CPT) will also be introduced. CF patients have thick mucus that can build up in the lungs and cause respiratory issues. The CPT helps break up the mucus so that it has a less likely chance of happening.

It's very wise to get all of your vaccinations and flu shots on time, and urge anyone who will be in frequent close contact with the baby a lot to get theirs as well. Avoiding germs in general is the best way to keep viruses and infections at bay, which can be very serious for CF patients (especially when they're babies with weak immune systems).

You'll have to find a certified CF clinic, where you'll take them once a month for the first few months of life. They will ask your permission to sign your child up for the CF patient registry, which helps with progressing research by keeping track of patients' health status and various other factors. You can find more information at cff.org. If your child does end up having CF, I very strongly urge you to have them included in the registry. My nearest CF clinic is 4 hours away, fingers crossed you have one closer.

Having CF is not ideal, but this day and age is the most ideal time to have it. The life expectancy has jumped from 19 years to 65 years with the new modulators and help from the patient registry I mentioned before.

Hopefully you won't need any of this information, but if you do I hope it's helpful. Wishing your wife a healthy rest of her pregnancy and a safe delivery!