We had the masks, we had set the protocols with the parents to be, and were isolating hard so we could be in our new grandson’s bubble. We even had COVID tests when our daughter went into the hospital and we were doing a happy dance to see that all of our hard work of isolation, keeping physical distance, and wearing masks at all times outside of our condo had been successful.
We were going to be able to meet and hold little Miles in our arms! And we did! He was adorable, but not very happy, seemed to be hungry all the time, and had been losing some weight in those first three weeks. Our young parents were going the extra mile and feeding him what seemed to be constantly but his sleep came in fits and starts and all three of them were getting so tired.
Then came a phone call that none of us expected.
In Texas, all newborns have a little blood sample taken at birth to screen for problems, and our little Miles had tested positive for Cystic Fibrosis (CF). Our daughter was calling to tell us that he had been referred to the Dell Children’s Hospital where an actual CF center was located and that they had also been put in touch with the Cystic Fibrosis Foundation.
She asked us if there was any CF in our family and since I was the genealogist for our side of the family, I could categorically say, “No, I had seen no indication of it going back for centuries.” Her husband’s family had no known history, either, and so they had not even thought about it when going through genetic counseling at the beginning of their parenthood journey. My husband and I reeled in shock and then we did what we do when confronted with the unexpected.
We educated ourselves.
I won’t go into a lot of detail here about the disease, but Cystic Fibrosis treatment has come a long way since I first heard of it (A friend’s daughter had it and died before she reached 20 back in the 1980s), and although Miles will deal with daily lung treatments, a special diet with extra enzymes every time he eats and will need to take special (and expensive) medicines, the combination of these will give him a good chance at a normal lifespan. This is such a blessing, and we are so grateful to the CF Foundation and all of the folks who worked on the treatment improvements and a potentially game-changing new medicine.
There is much ahead for all of us, but we have hope, faith, and this beautiful little boy to focus on.
When life hands you difficulties…You make the solutions you can.
