Finding Support After My Son’s Diagnosis

When my son was diagnosed with cystic fibrosis, it was a shocking experience that distanced us from our family and highlighted the taboo topics our culture avoids. Thankfully, we discovered support within the CF community.

Oct. 15, 2024 | 6 min read
Photo of volunteer, Elizabeth Guzman
Elizabeth Guzman
Elizabeth with her husband and son at Great Strides

Before my son was diagnosed with cystic fibrosis, my life lacked a profound sense of purpose. I did the typical routine a wife and a mom of three does. When I did have time for myself, I’d upload beauty videos to TikTok as a hobby. While we were waiting on the arrival of our son, Liam, we felt overly prepared and at ease. Although this was not my first experience giving birth, it certainly became my first tumultuous journey as a mother. 

A few hours after delivering Liam via emergency C-section, we were confronted with the alarming reality of his condition. His abdomen was distended and firm, and his oxygen levels were critically low. What was meant to be a joyous night spent with my newborn turned into a nightmare. He was transferred to another hospital for abdominal surgery, and I found myself alone in a room without my baby. It felt like grief to hear the cries of other newborns while mine was undergoing surgery. 

My sister flew in from Colorado the next morning, and I felt a sense of relief. She works in the medical field and she’s a lot better understanding all the medical terms the doctors were throwing at me. My brain could not process anything at that point. I was numb.

Dr. Nakamura — a name that is now engraved in my mind — entered my hospital room and posed a question I will never forget: “Is there any history of cystic fibrosis in your family?”

What was cystic fibrosis? What did we do to get it? How do we get rid of it? I was raised in a traditional Hispanic household, and I was taught to remain silent and refrain from asking questions. However, questions were all I had, and I have never been one to remain quiet. I must admit that I have never been particularly fond of doctors. I grew up hearing phrases such as, “You don’t go to the hospital unless you are dying,” and “Doctors will always find something wrong with you to profit from your illness.”

I responded to Dr. Nakamura with a definitive “No,” before he had even finished his question. It wasn’t that my family was perfectly healthy, we simply did not discuss these matters openly. My sister interrupted and said, “I am actually a carrier of CF…”

The room went quiet. I was confused as to why she said something that I never was aware of.

Life works in mysterious ways. Two years before Liam was born, my sister had my nephew, Leo. Being a first-time mom, she got all the genetic testing and that is how she found out she was a CF carrier. Her husband got tested and confirmed he was not a carrier. Their son also was not a carrier. Since it didn’t turn into anything more serious, they kept that to themselves.

Regrettably, I was never tested to see if I was a CF carrier, despite this not being my first experience with childbirth. I found myself questioning why this information had not been communicated to me earlier. I refuse to believe my son had cystic fibrosis because the first thing that popped up on Google was “most common among Caucasians.” And to my knowledge, both my and my husband’s families are of Mexican descent.

Liam ended up staying in the NICU on IV fluids for 60 days. I let my family know, thinking they could guide me. It ended up creating a distance between us. It felt like they looked at us as if there was something wrong with our son. It didn’t help that he had a bag attached to his stomach in order for him to poop. Liam came home with an ileostomy — another thing to add to the things I don’t know. 

Rather than receiving the typical supportive remarks from family after the birth of a child — “Let me hold your baby,” “How can I help?” — we were met with uncomfortable stares and comments such as, “If we pray, it will go away,” a common response within our culture. We often conflate beliefs with facts and facts with myths.

I paused my career to fully focus on my son’s condition and the care it needed. I struggled to establish a routine with the added treatments, medications, doctor visits on top of my responsibilities as a wife and mother of three. 

One day, an email inviting all CF parents to a dinner hosted by the Cystic Fibrosis Foundation came through my inbox. I was shocked that there were more of us, especially nearby. I instantly RSVP’d. Being there felt like having dinner with family. Sure, we all look a little different, but they understood US and we understood THEM! 

Since that dinner, something has fueled me to talk about cystic fibrosis any chance I get. I have created a national team called Señor Liam that participates in Great Strides in two different states. I have attended two Volunteer Leadership Conferences and one March on the Hill, which by far was the best experience of my life. 

I now incorporate cystic fibrosis within my beauty videos and my vlogs to doctor appointments. A once-hobby has turned into a place where I can reach others and educate them about CF. One day I posted a video of how I change my son’s ostomy, and it went viral.

Although there is no cure for CF yet, there’s hope and resources. I will use my voice and my creativity to spread awareness until it’s done.
 

CF is not familiar within our Hispanic culture, but it can and has impacted us. This year, my very traditional family came together to attend Great Strides. I was able to get them out of their comfort zone and show them there’s a place for us — and if there’s not, we are making a way. I will continue to create awareness and help the CF community — specifically the Spanish-speaking Latin community — to provide education and encourage them to share their story. 

Interested in sharing your story? The CF Community Blog wants 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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Photo of volunteer, Elizabeth Guzman

Elizabeth is a mother to three children, one of whom is diagnosed with cystic fibrosis. Born in Mexico and raised in Colorado, Elizabeth now lives with her husband Christyan in Las Vegas with their kids and their dog, Café. Elizabeth is a state advocate for the CF Foundation. She has created a national team in honor of her son called Señor Liam. Elizabeth is also a voice for the Hispanic community and a beauty guru on TikTok who has incorporated CF in her daily “get ready with me” videos. She uses her social media platform to bring awareness to CF. You can find Elizabeth on TikTok and Instagram.

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