From a young age, I was familiar with cystic fibrosis. In 1996, my younger brother died from it at 3 months old. Then, after graduating from nursing school, I took my first job on a pulmonary floor that received cystic fibrosis patients from the surrounding region. The treatment that the patients received came from world-class specialists, but even then, I still didn’t “get it.” When my husband and I got married, we knew that we were carriers of the cystic fibrosis transmembrane conductance regulator (CFTR) gene mutation and our children had a 25% chance of inheriting the disease; but it wasn’t until we had our second child and received the news of his diagnosis that the odds seemed not in our favor.
I had been home with my newborn son for only six days when I received the news. I sat at my kitchen table and listened to a voicemail from the pediatrician explaining that my son’s newborn screen had shown elevated levels of immunoreactive trypsinogen (IRT) and that I would receive a call from the children’s hospital to arrange further diagnostic testing. I cried as I put down the phone. At that moment, my husband didn’t even know what was wrong. He just held me close.
I knew that medical advancements had come a long way since my brother had passed almost 25 years earlier, but I was still scared. What would life look like raising a newborn with cystic fibrosis and a toddler? How would my family adapt to so many changes and challenges all at once? And of course, I worried about my son’s future and health. Regardless, I knew that my family would learn and grow together; we were a team. I didn’t know what the road ahead looked like, but I knew that my son’s life was — and is — a gift and that he is loved.
As families with more than one child know, adjusting to life with a second child is a challenge. Modeling for the older child that they are no longer the center of attention is difficult for both parent and child.
But the social and familial challenge of two children on top of doctor appointments, diagnostic tests, chest therapies, and medications sometimes was — and still is — difficult for my family.
Adapting to a rather rigid schedule was tough at first. Getting my son up around 6:45 a.m. each morning to begin his nebulized medicines followed by 30 minutes of chest physical therapy can be fatiguing, especially when my husband travels for work and I am solely responsible.
My entire family has grown so much closer by working together and finding ways for our 3-year-old to join in. Now, it’s not uncommon for my daughter to read books to her brother, sing, dance around, and sometimes watch a television show with him. The 30 to 60 minutes spent with my son every morning and night is not only crucial to his health, but it’s also very important bonding time. For the next few years — while he’s still too young to do the medication by himself — I have guaranteed, uninterrupted 1-on-1 time with him, and I am very grateful for that.
Although I have no idea what the next six months, five years, or even what tomorrow holds, all I can do is take it one day at a time. My son is just like any 1-year-old — curious, a little mischievous, and very cute. And when I am putting him to bed at night, I look at him and thank God for his health and sweet life. There are days when I wish I didn’t have to worry about counting Creon® capsules, making sure we have an ice pack for his Pulmozyme®, or lugging around his new vest; but I am also so grateful that medical advancements have come so far and — for the most part — he will develop like any other child.
Looking back on his first year of life, I can admit that the fear of having a child with cystic fibrosis was greater than the reality of having a child with cystic fibrosis.
I know that my family has been blessed tremendously because we have amazing doctors, my son has been very healthy, and I have a supportive family. I also realize that growth often comes from challenge and change. Adapting to life as a parent of a child with cystic fibrosis is tough, but I believe that I have become a better wife and mother because of it.
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