Navigating my Son’s First Year With CF

I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.

Sept. 26, 2023 | 7 min read
A selfie of Jessi Hutchens
Jessi Hutchens
Jessi's fiance smiling and holding their son, Oliver, who has CF

Being a mom of two boys already, when I found out I was having another one I thought it would be a breeze. How could it be that much different? Oh, how I was so wrong. Everything from the pregnancy up to today has been a whole new ballgame! 

First, I developed gestational diabetes with my third little guy, Oliver. I was induced to prevent complications, so we ended up knowing exactly when he would be here. We were so excited to finally meet him, but I was also so scared because I had never been induced before. I had extremely easy labors with the first two pregnancies, but Oliver’s delivery was totally different. He came into the world giving us a bit of a scare — almost requiring an emergency C-section —but thankfully he was healthy and happy once he arrived. In the hospital, his sugars kept getting low, so we had to stay a little longer than I had hoped. But eventually we got discharged and were on our way home. We were so excited to complete our family and let the older boys finally meet their baby brother! I was even getting to breastfeed, which was beyond thrilling since I was unable to with my first two.

I had so many things planned for us with Oliver being born at the end of October — visiting pumpkin patches, watching the Evergy Plaza Lights turn on in Kansas City, visiting Union Station to see the gorgeous holiday decorations. But that would all change for us. 

Oliver’s first checkup came and he hadn’t gained any weight so, of course, the doctors were concerned. We had to go back the next day for another weight check and — again — no weight gain. Then they told us to come back in a week to see if Oliver would gain anything. The week came and went, and when we checked Oliver’s weight again, he had still barely gained anything. We were getting worried. I felt I was doing everything right, but it just wasn’t working. We started to supplement his breastmilk with formula in hopes of helping him gain some weight. 

Shortly after, we got a call telling us that Oliver’s newborn screening showed abnormal results and it was very likely he had cystic fibrosis. We had no clue what that meant — the first two boys had nothing like that. So we Googled CF, which I don’t ever recommend when you have no clue what cystic fibrosis is — it’s terrifying! The CF clinic called quickly after and told us the genetic tests showed that Oliver had two copies of the F508del gene mutation and that we would need to bring him in and start treatment. We were terrified and there were definitely some tears. All these plans I had in mind were rushing through my head. Would Oliver even be OK? The clinic tried to calm us and told us it would all be OK. They told us to look at the CF Foundation’s website instead of Google, and my fiancé — being the researcher he is — went to town reading everything he could. 

We went to our first CF visit and, whoa, it was so much information my brain hurt. We were given booklets, care packages, and more information to read. Oliver got prescribed digestive enzymes to help him finally gain some weight, and we were told we needed to give him salt daily.

Oliver finally started to put on some weight and that was such a relief, but this new “normal” was hard. Every single feed, Oliver had to be given enzymes or he wouldn’t digest his food and keep on the weight. It was exhausting having to pump every 2-3 hours, fortify all his bottles, and make sure to always remember those enzymes, all while trying to take care of the older boys. There were, of course, more tears. Thank goodness for my fiancé and all the help he did. Fears of being around people caused a lot of lonely feelings, and many school events were missed for the older kids. We also had to keep them away from Oliver whenever they had even the littlest cough. But we just kept telling them this isn’t forever. 

Over time, little Oliver gained more weight and grew a bit more. Then we had to start a daily inhaler with some claps on his back and chest, along with everything else.

All of it was a lot and felt very isolating. I felt like I was leaving my older boys out too much, especially because we didn’t want to go anywhere crowded. But again, we just kept reminding ourselves that this isn’t forever, and it’s what’s best for Oliver’s health.
 

For a while, though, I felt helpless and like I had no clue what I was doing. I joined a cystic fibrosis parents Facebook page to find other families going through similar situations, and I followed other moms of children with CF on Instagram, including those who shared their stories on the blog.

Thankfully we are now coming up on Oliver’s first birthday in October, and things are getting better. We are finding the right balance between meeting his medical needs and having the older boys involved. We have a good routine, and we make sure to get outdoors whenever we can, trying to have as much of a life as possible while still being safe! The older boys play soccer and get to socialize while Oliver gets to watch. We are so excited he’ll be able to start Orkambi® after his first birthday and take another step toward living a healthy, fulfilling life. We’re also thrilled that he can start Trikafta® after his second birthday. Knowing that Oliver can begin taking these treatments makes things a lot less scary, and he can start to live a life as any other kid would. 

Starting to see the light at the end of the tunnel is a great feeling, even though we know Oliver’s CF isn’t going away. I want other families to know you aren’t alone. It’s scary and hard when you already have other kids, and finding a balance is so challenging. But it’s all worth it! I’m so thankful for this community and how far things have come for CF!

Interested in sharing your story? TheCF Community Blogwants to hear from you. 

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Caring for a Child With CF
A selfie of Jessi Hutchens

Jessi is the mother of three boys and is from Blue Springs, Mo. She previously worked as a hairstylist and later as a phlebotomist, before becoming a stay-at-home mom after the birth of her third child. In her free time, Jessi loves lifting or spending time outdoors with her kids. She participated in the Kansas City Great Strides walk for the first time in May 2023 and plans to continue walking every year! You can connect with Jessi through Instagram.

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