The pain and joy of being pregnant with a cystic fibrosis child
A mother's message of hope for those who receive a prenatal CF diagnosis
Recently, an expectant father reached out to me on social media after receiving a prenatal cystic fibrosis (CF) diagnosis. He told me that he was so grateful to our family for sharing our journey and giving other families hope.
These types of messages are my favorite. The truth is, when I was pregnant, it took a lot for me to see through the darkness and find hope after our daughter Claire’s diagnosis.
I first Googled cystic fibrosis at 24 weeks pregnant. At that point, I knew nothing about the disease. I remember the perinatologist telling us in the ultrasound room that CF was one possible reason for our unborn baby’s ultrasound abnormalities. I thought to myself, “It’s definitely not that because I’ve never heard of it.”
But, to my surprise, two weeks later, both my husband and I were confirmed as carriers of cystic fibrosis. That meant our baby had a 1 in 4 chance of inheriting the disease. In that moment, I knew she had it. I consider that to be her diagnosis, and not the official news we received in the neonatal intensive care unit.
From darkness to hope
Instead of hoping Claire didn’t have CF, I threw myself into learning about the disease. I wanted to know everything I could about it. At the urging of my reproductive psychiatrist, I only did “official” research. That meant I did not use social media. I only read publications and blogs from reputable sources, such as medical journals. I found myself immersed in everything related to cystic fibrosis.
I could tell right away that our lifestyle would need to change if our daughter was born with the disease. I was worried that we might lose friends and family because of the intensity of the care regimen. I thought we would stop traveling in favor of safer environments. It felt like our world was on the verge of shrinking beyond recognition. With that came a dark depression that was hard to emerge from.
But doing research while pregnant also gave me hope — hope I didn’t think I would find after our baby’s abnormal anatomy scan. The more I read about CF, the more I believed that my baby’s fate wasn’t all doom and gloom. In fact, I was comforted to know that she was being born into a transformative era of the disease. New highly effective modulators were being approved during my pregnancy. It seemed like every day I read something positive about the course of the disease.
Still, I was scared. I didn’t discount that it was going to be hard to raise a child with CF. I knew it was going to be the biggest challenge of my life. My hope is that those pregnant mothers and fathers out there facing a diagnosis can see the promising future their child has. It won’t be without grief or pain, but it will be amazing.
I was so worried about my world shrinking down and becoming unrecognizable, but in many ways it’s actually grown. Yes, there has been loss, but we’ve also gained so much from living the rare disease life. I’ve met some of the most amazing people on this journey I never would’ve connected with otherwise.
Being Claire’s mom has given me the courage to speak up, be vulnerable, and share our story so that other CF families don’t feel so alone. I am honored to be a bright spot to guide other parents through the darkness of an uncertain future.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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