My Son has Cystic Fibrosis
How did I find out Blake had Cystic Fibrosis? I had a great pregnancy with zero problems whatsoever. Blake was a whopping 9lbs 2oz when he was born. He was seemingly a healthy baby boy. About one week after Blake was born we got the results from the newborn screening test that said he had “elevated” immunoreactive trypsinogen (IRT). Having no clue what that meant, I obviously did what any other modern day mother would do – I googled it. The result was scary. That was the first time I really saw the words “cystic fibrosis”. The report also indicated that the state’s DNA lab was backed up and we would not have DNA test results for some time. So we contacted our pediatrician who sent us for a sweat chloride test. Again, not something I had ever heard of before Blake came along. The results for that test were nearly immediate and conclusive; Blake has cystic fibrosis. These events occurred over a span of two weeks, all the while Blake was steadily losing weight, constantly crying, eating non-stop, and blowing through diapers (quite literally). It was a rough start. We were scheduled right away with a CF specialist (pediatric pulmonologist) and began “clinical” visits at around three weeks of age. The first thing the doctor gave us were digestive enzymes. Apparently, the non-stop eating, crying, and loose stools were due to the fact that Blake was “pancreatic insufficient” (PI), which means he can’t process fats. So all that milk he was drinking was running right through him, without digestion, causing his weight loss and fussiness. The enzymes allowed him to process the fat and obtain the proper nutrients he needed to begin gaining weight. We also started pediatric fat-soluble vitamins (A, D, E, K) during that first visit.
What is it like caring for a child with cystic fibrosis? Since CF is a genetic disorder, it’s typically something you see through generations. Not true in our case. We had no clue we both carried the deformed genes. We also have an older son, Bryce, who was thankfully born without CF. I will say that raising kids, healthy or not, is a challenge – period. Raising one with CF is a challenge squared! The day-to-day life involves many additional tasks, including: planning high fat meals for one, dosing enzymes for each meal containing fat, administering three to four different nebulized medicines twice or more times per day (we call them “treatments”), performing chest physical therapy twice or more times per day (we call it “vest time”), daily nasal rinses, and taking supplements for nutritional health – fat-soluble vitamins and probiotics. As I write this it seems like a lot, but we have it down to a science. It’s all about routine...we do things in the same way each and every day. I’m naturally an organized person, so structure suits my personality.
What I would say to other parents of children with CF?
1. I would tell them to not let CF rule your life. CF will become a part of your life, but it doesn’t define your family or your child. Your child is so much MORE than CF! We hardly talk about CF really. It just is. We live the same way we did before Blake came along – it’s just more structured.
2. Learn as much as they can about CF. For me, the “knowledge is power” quote rings true. I educated myself, slowly, so that I understood what the doctors were saying during clinic. I also met other CF moms who willingly shared their knowledge with me.
3. Stay positive. Seriously. You have to wake up and make that decision each and every day. It’s a choice. Find that special someone who lets you cry and shares your worries and concerns for your child’s life (even if it’s not your spouse). Vent away, as needed.
4. Build a village. We live a thousand miles away from our family and make it work. We both have full time careers so we hired au pairs (now on our fourth) to care for our boys. Best decision we ever made! We have made great friends who have become like family. And most importantly, we have our wonderful family supporting us from a distance.
5. Don’t think too far ahead because you will miss living in the now.
6. Each of us handles the diagnosis in our own way – remember that when someone is acting ‘funny’ around you. Do not get upset when someone says the ‘wrong’ thing. Most people have no idea how to react, so give them a pass. Let them provide words of wisdom, let them pray, let them compare CF to asthma (insert eye roll!). It’s all well intentioned.
7. Do not let CF rule your life!