Nikki Shanko

The year 2015 showed us some of the ultimate highs, along with what we thought would be some of the lowest lows. April 1, 2015, Johnny and I were blessed to find out that we were expecting our first child. In July, we just knew we were meant to be “boy” parents and with great excitement that was very much confirmed! The remainder of the pregnancy was as “normal” as one could be, we were told we had a growing, healthy baby boy that was due Dec 19.

Our little guy, Carter William Woody, proved that he was way too eager to wait until then and decided to make an appearance on November 14, 2015 at a whopping 9 pounds and 15 ounces! The first two weeks at home with Carter was absolutely amazing but between us and our pediatrician we knew something wasn’t exactly right, he had a very difficult time holding his weight even though he was eating around the clock! On November 30, 2015 we received a phone call stating the Carter’s newborn screen had come back positive for cystic fibrosis with 2 copies of the DF508 mutation and the next day we were to report to Children’s Hospital of Richmond.

December 1, 2015 will always be a date that sticks out in our heads, being first time parents and finding out news that your child has cystic fibrosis at that point was totally earth shattering to us. We knew nothing about what the disease held going into that meeting, but after multiple hours with our amazing team at children’s we were assured that this was no longer a “death wish.” They stressed to us how far research had come over the last couple years due to the Cystic Fibrosis Foundation and how it was reasonable to believe that within Carter’s lifetime a cure for this disease would be found.

Unfortunately, no matter how much reassurance we were given, I was absolutely terrified! Not just for the first day, week or month after diagnosis but for almost the whole 1st year. Was I going to be able to adhere to all of the treatments/medications that he required? How will I ever know if there is something CF wrong with him, he looks so healthy? How could I take this beautiful child out in public, not knowing what germs he was possibly going to be around and what the result would be if he contracted those germs? I didn’t want to talk to anyone, friends with healthy children didn’t understand and even with a connection or two to CF moms, “what was I going to say?” I couldn’t hold a conversation half the time without crying.

Somewhere around the first year after being diagnosed it all became our norm. I was no CF professional, but we had numerous illness’/colds, a bronchoscopy, multiple doctors appointments (pediatrician, clinic, specialist, speech therapy, etc), we had administered ton of medications and had hundreds of chest physiotherapy under our belt. I put my grief aside and realized even though Johnny and I didn’t have a large support system, there are other individuals out there that are knowledgeable and willing to assist in guiding us through this crazy life. I discovered that not only do we have an amazing clinic support team, we have the local cystic fibrosis foundation office practically in our backyard and reaching out to talk to others in my shoes is not a bad thing, it lifts weighs like I never thought.

Fast forward 3 years now we have a few more bronchoscopy‘s that have been added to our list of procedures, a 2 week hospitalization due to a CF exacerbation, more colds (the typical toddler stuff!) and a boy that has taught all of us just how exciting and precious life can be. I have learned that raising awareness and being involved (Great Strides walks, peer to peer meetings, CF family days, etc) helps with the coping of the disease, being able to stand beside other families that fight this same battle fills my days with less anxiety of the “what if’s.” I have learned the importance of letting Carter be a child and not letting him become cystic fibrosis.

Sincerely,
Nikki Shanko